postcards from holland

Exceeding Expectations!

2007-09-24T11:56:00.000-05:00

In 2003, the doctors told us, "She may have a short life and if the seizures cannot be controlled, she may not live past age 5." Our Jenelle will be 5 years old in less than a month. And if you haven't been following Jenelle's Journey then you wouldn't know that Jenelle has been thriving, developing and learning new things every day. According to her doctors, she is now "exceeding their expectations in every way." And this is the news every parent of a special needs child longs to hear, especially when given such a grim prognosis in the beginning. Rather than a date we hoped would remain far off in the distance, that "age 5" number is now a symbol of how far we've come.

I think doctors have the most difficult job in the world. They have to be an expert in their field, up to date on the latest research, and carry the hopes and lives of so many in their care. They have to be honest with their families about details few like to discuss. Details like prognosis, quality of life, possible death and coping. I think the best doctors tell you everything good and bad, and along with you hope that your child proves them wrong and defies the odds.Many friends and family have commented recently on Jenelle's upcoming birthday, and the significance it holds.

While I realize we are no where near the reality of that grim prognosis we were given in 2003, I also realize the slim possibility that things could go wrong very quickly. Yet that shouldn't diminish the achievements Jenelle has made and continues to make these past 5 years. We should always keep hope that things will continue to get better. I mentioned to a friend recently that after her upcoming birthday, Jenelle was going to be on "borrowed time". My friend was rather angry with me for saying that. But it is true in a way, albeit very honest and frank. It is all in God's hands and we just get to enjoy the here and now.

I spoke to a Mom a year or so ago who lost her child with Down Syndrome at the age of 23. Her words about her daughter have always stayed with me as she said, "Kelly, don't be sad about her passing. We were blessed to have her in our lives for 23 years! That was 13 years longer than the doctors originally thought! Each day is a gift, and we were blessed to have that gift as long as we did." I remind myself of this frequently - these beautiful special children that enter our lives, and turn our world upside down and teach us new things in life are special gifts that we only get to keep for a little while.

When your child is 10 months old and having 200 or more seizures a day and every medication you try isn't working; reaching age 5 seems a lifetime away. And yet, if someone had told me Jenelle would be standing, crawling and almost walking - I wouldn't have believed them. Not because you believe in the prognosis, but because it seemed so far away it was almost impossible to be true.

The day our neurologist said, "She is doing more than I ever imagined. She is now exceeding expectations", I knew we could breathe a sigh of relief. Instantly I knew that "age 5" was no longer a significant number we needed to pass. And silently, I said a prayer and thanked God for giving us more time with this wonderful, most precious gift.

The rewrite

2007-07-17T09:45:00.000-05:00

I read lots of scrapbooking magazines and sometimes I come across a layout that has journaling saying, "I love my life - my life is everything I wanted and more," and I wrestle with that concept a lot. Can I ever get to the point where I can say that my life is everything I wanted and more? Sure, if I rewrote what it was that I wanted.

Did I want to be happy? check. Did I want to have a career that I enjoyed? Sure. Did I want to have a fantastic marriage? Double check. Did I want to have two completely blissfully neurotypical children? Yeah, that too.

That too. I never once entertained the thought that it would be otherwise.

I've read this before, but it's imperative when something we don't like (but can't change) is presented to us, we learn to adapt, to dream new dreams. Did I actively wish for a depth & meaning to my life that many others will never get to experience? Not at all. But that is the gift that has been bestowed upon us here in our happy little family. And at the end of my life, I will be grateful for this gift. I kind of want to take it back to the returns desk at times, but that's okay. It's all okay.

Back and Forth

2007-05-18T00:05:00.000-05:00

Like most kids her age, 3 year old Ellie loves the phone. Since her daddy works outside the home and her grandparents live far away, she gets lots of practice with the real deal to supplement her regular conversations on toy phones and similarly shaped objects. (The remote control was last year's favorite.)

Last Friday, I accompanied Ellie's preschool class on a field trip to Grant's Farm. Later that afternoon, Ellie talked to my mom about it on the phone.

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"Hi, Gah-mah!" Ellie said.

My mom said hi and asked Ellie what she'd seen at the farm.

"Camel! Eagle. Chickens. Goats. Bye bye!" She waited for my mom to say goodbye, then passed the phone back to me.

My mom nearly cried with happiness. Hi and Bye aren't new additions to Ellie's phone conversations, but they're a little inconsistent, and she didn't used to wait to hear responses, let alone answer questions. This question she answered appropriately, in detail, with no prompting from me (I'm often whispering in her ear, exactly as I should not be).

Instead of a dinner conversation like this:

Mommy: Ellie, what did you see on your field trip today?

Ellie, eating pizza: 'za!

Mommy: Did you see an elephant?

Ellie: Eh'fant. Mo 'za?

I got several real conversations with Ellie where she was able to let me know what she found really interesting. And the camel that came right out into the road with us was far more interesting to her than the elephant. After all, she stayed way over on the other side of her pen and we saw elephants at the zoo just a couple of weeks ago.

I know that people dealing with infertility are annoyed when I complain about my kids keeping me up at night. Similarly, I get frustrated when parents complain about their kids talking too much and asking too many questions. I look forward to feeling that particular frustration.

Cross-posted at Yeah, But Houdini Didn't Have These Hips.

Can there be a balance between work and healthcare?

2007-05-06T18:02:00.000-05:00

from Becca, at http://www.nataliebear.com

I wasn’t signed up for this. This is not what I dreamed of when I dreamed of becoming a mom. Which by the way was it for me, it terms of career goals. Ask the 5 year old me, “Becca, what do you want to do when you grow up?” Never did I say, be a bank auditor or compliance specialist. No, “be a mom,” was typically my answer. I did not dream of auditing bank areas for regulatory compliance or spending my days reading banking laws.

My how time changes us. Here I am a working mom, with a child that is waiting for her second liver transplant. And I consider myself lucky.

I can still work; Natalie is stable enough right now to ensure that. And I have a fantastic employer. I work for a bank that is small enough to still care about the family unit and about people in general. For the most part, it is part of our corporate culture. From the top-down I have heard, “Family comes first. The job will still be here.” And this was exactly what I needed to here during those times when a hospital stay seemed never ending.

It was one less thing to stress about during the summer of rejection, PTLD, hemolytic anemia, and portal vein stenosis. I knew that my life had some sort of stability. Even if only a little.

And now, now that our time in-between hospital stays has grown longer, now it is about balance. I get lab results faxed to me at work, and during break time or lunch I can be seen making calls to the hospital. Vacation days are used for CT scans or “tubey” flushes, and late arrivals happen because a proper prograf level is done in the morning and the lab doesn’t open until 7:30. Meds are given in the morning before going to work and in the evening when returning home. And in those rare occasions when IV meds were necessary, I would hang out at Natalie’s babysitters during my lunch break to administer them through her PICC line. (And it helps to comfort me knowing that sweet Jennifer the babysitter has a medical background.)

While it’s not the job or even the career path that I asked for, I think that being Becca the mom-wife-auditor-bank-compliance-nerd-dishwasher-laundry-washer-cleaning-lady-relay-for-life-team-captain-organ-donor-advocate-nurse suits me just fine.

family

2007-02-19T16:23:00.000-06:00

(background: I'm a married mom of 2, Noah is 5 with autism, Maya is 2.5, neurotypical)

I was sent this article in the NY times about a sister that has twin autistic brothers. Those are always a little dangerous for me to read. They're like a glimpse of the future for me, but they're rarely ever positive. No, in fact, I haven't seen anything written positive about siblings and their brothers - about what they find to be special about them. No. This one was about the struggles. So I do read things about siblings of those with autism, but I always regret it. They're not our family. Even so, I just ache at the pain and hard growth that Maya will go through being in her situation. I was trying to process the article when it hit me that what I want to tell her the most is that, despite how difficult and painful it may be, this is my belief: she is made a better person because of him. And he is a better person because of her. Just like I am a better person because of my life partner, and certainly because of my children. I just hope that I can succeed in allowing her to grow and feel authentically about the whole thing, and supporting her in her journey. Each of us has journeys to go through, and if we can feel loved, and nurtured, and supported in doing so, I think we'll all be okay. I look forward to what the future brings. To see how my children grow and blossom.

mahalo, hawai'i

2007-01-04T22:14:00.000-06:00

We eloped from the hysteria of the Christmas season and escaped to Kaua’i in Hawai’i for 12 days. Aaron was an amazingly flexible and cooperative traveler.

I always tell new parents of babies with Down syndrome about Aaron’s travels in the first three years of his life. He’s been to Mexico twice, Idaho, Montreal, and Vancouver and Vancouver Island countless times – and now we add Hawai’i to his list. He gets dragged along whenever we go just like the rest of our kids.

In Kaua’i, Aaron LOVED the sand. He had sand in his mouth, sand in his diaper, and sand in his ear. He shoveled the sand, dug his hands in the sand, and lay down in the sand to be buried in the sand by his two siblings.

He took great joy at yelling at the waves, ‘OH NO’ when they crept close to him, and turning on his heel and running up the shore as the waves chased behind.

We discovered that he is scared of big waves that knock him over (who isn’t?) and we found out on our many roadside lookout stops to gaze at canyons and waterfalls, that he is terrified of heights. (Here in the Prairies of Canada, we don’t have many differences in elevation). He’d bury his head in my shoulder whenever we stood at a look-out point. Duly noted.

Aaron sat patiently in restaurants as long as he had French fries and a mango smoothie in front of him. He slept like a dream, and the 12 hour travels to and from Hawai’i went smoothly with a steady stream of snacks, toys and airplane headsets.

Isaac and Ella, his brother and sister, taught him to sign and say ‘hang loose’. Coming from Aaron’s mouth, this sounds like ‘ang oose’. This caused us all to collapse in a fit of giggles. If there is anybody who knows how to hang loose in this family, it is Aaron, age 3.5.

What I loved about our holiday is that it was so normal. It wasn’t about Down syndrome. I could put Aaron’s programs and services and therapies out of my mind. For in paradise, just for ten days, his Down syndrome didn’t matter. What mattered was catching a wave with the boogie board, drinking mai tai’s, eating banana cream pie and playing football on Ke’e Beach just after sunrise.

Thank you, Hawai’i, for giving me that gift. My little surfer dude’s ‘aloha’ attitude fit perfectly in paradise. I’m now tanked up to start back with pre-school, developmental specialists and therapies on Monday. Hang loose, dear friends.

true story, as heard at a presentation yesterday

2006-11-29T09:42:00.000-06:00

The mom of a child with a disability starts to look into finding a school for her son for Grade 1.

She meets with the principal of their neighbourhood Catholic school.

Principal:
Well, you should go to a district site (a 'special ed' segregated program) . THEY should be with THEIR OWN KIND.

Mom, surprisingly articulate after the THEY comment, and recognizing she's at a Catholic school:
So you are telling me when Jesus said, 'let all the little children come to me', he meant - 'I mean THAT child, but NOT THAT ONE?'

Bravo, Mom. Well said...

November is National Epilepsy Awareness Month!

2006-11-09T12:06:00.000-06:00

November is National Epilepsy Awareness Month, and being that seizures are a common thing for many special needs children regardless of their diagnosis, I thought I'd share with you some facts about Epilepsy and some First Aid tips for someone having a seizure. Remember, purple is the designated color for Epilpesy Awareness Month, so please try to wear purple often during November.

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My daughter Jenelle has many different special needs, the cause of which remains undiagnosed. She also suffers from uncontrolled seizures in the form of Lennox Gastaut Syndrome.

Facts about epilepsy:

Epilepsy is one of the most common disorders of the nervous system.
It affects people of all ages, races, and ethnic backgrounds.
More than 2.7 million Americans of all ages are living with epilepsy.
Every year, 181,000 Americans will develop seizures and epilepsy for the first time.
Epilepsy can develop at any time of life, especially in early childhood and old age.

Facts about epilepsy in Children:

Childhood epilepsy currently affects more than 300,000 American children under the age of 14.

Epilepsy may be time limited or long term. Early recognition and treatment are keys to the best possible outcome.

The epilepsy may be associated with serious, difficult-to-treat syndromes, including infantile spasms, Lennox-Gastaut syndrome, genetically related conditions, and developmental disorders.

Social impact in childhood is often severe, producing isolation and loss of self esteem.

Our Jenelle:

Well, I have a whole blog about my special girl so I'll be brief. Three years ago, we were told that if we could not control Jenelle's seizures, she would not live past age 5. Like any parent, we vowed that day to fight this monster that threatened to take our child. The fight has been long and has had many ups and downs, and it continues today.

Jenelle just turned 4 a few weeks ago, and she is doing better than we ever imagined after gaining significant seizure control in July 2005. In fact, last weekend she pulled herself up to stand! She still has daily seizures, but not as many as before. We are very hopeful that Jenelle will have a long and active life, and we are hopeful that she will overcome this devastating condition.

Recently I read an article at the National Epilepsy Foundation website about actor Greg Grunberg (Alias and Heroes) and how his son suffers from epilepsy. The article is very interesting, and Greg really makes you understand what it is like to be a parent to a child with epilepsy. I highly recommend reading the article for a better idea on how epilepsy can affect the whole family. You can find it here.

Seizure First Aid:

Witnessing a seizure is frightening. Witnessing your child seizing is indescribable. Prior to our learning that Jenelle was having seizures, we had absolutely no experience with seizures or first aid for seizures. Now we are old pros and it is really something you just learn by fire so to speak. Often one of the common things I'm asked by many people is "What do I do if I see someone having a seizure?" The hardest thing to do is remain calm, but it is the best and first thing you should do. Make sure the person seizing is comfortable and not hurting themselves (i.e. if they are repeatedly hitting their head on concrete - move them!) Start timing the seizure and wait it out until the seizure stops naturally on its own. If the seizure goes longer than 5 minutes, call 911. And its is just as simple as that!

Here are some "Grand Mal First Aid" seizure things to do:

Keep calm and reassure other people who may be nearby.

Don't hold the person down or try to stop his movements.

Time the seizure with your watch.

Clear the area around the person of anything hard or sharp.

Loosen ties or anything around the neck that may make breathing difficult.

Put something flat and soft, like a folded jacket, under the head.

Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.

Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.

Stay with the person until the seizure ends naturally.

Be friendly and reassuring as consciousness returns.

Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

Links for more information:

National Epilepsy Foundation

More about my Daughter's Epilepsy - Lennox Gastaut Syndrome

I think in order to get rid of the stigma associated with seizures, we need to advocate more about Epilepsy. Thank you for listening and letting me share this information with you!

they

2006-10-21T23:15:00.000-05:00

Two months ago, after taking assorted extended family members to a Down syndrome association dinner and dance, in hopes that seeing people with Down syndrome will start to change old perceptions and stereotypes:

My sister-in-law: They sure are short, and they sure like to dance, huh?

Me: (sound of me knocking my head against the table) AAAAAAAAAAAAAAHH

A conversation I had with my husband’s stepmother just last week:

Me: Aaron goes to his neighbourhood preschool. The government gives us funding for a Developmental Specialist to go with him and help him if he needs it.

Stepmother-in-law: Well, if all of them go to regular schools, there isn’t going to be enough room in the classroom for all those kids and their aides.

Me: What?!?

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Stepmother-in-law: And all of them are going to take attention away from the normal kids.

Me: (still in shock, but trying to be rationale) Well, studies have shown that typical kids learn a lot from children with disabilities.

Husband: (hates conflict, but chimes in) My business partner has a son with autism who is in grade one. What they have actually done is surround him with a group of kids who help teach him in the classroom. If you actually do something by teaching, you learn a lot more than just sitting passively and listening to a teacher.

Stepmother-in-law: I think they should be in special schools so they have special teachers help them.

Me: I want Aaron to go to the same school as his siblings. Kids with disabilities do not just take, take, take – they give back, too!

Me: (continuing, starting to lose my patience, but trying to express my point of view) We want Aaron to have choice in his life so he can live independently if he chooses to.

Stepmother-in-law: I think they should stay in institutions. They closed down the institutions and now they are all on the streets causing trouble. Look at East Hastings! (A notorious homeless and drug haven in Vancouver).

Me: (unsuccessfully suppressing my rage) So you are saying that we should lock up and segregate all the people you feel uncomfortable with? How about people in wheelchairs? Should we go back to segregating black people while we are at it?

Husband: Um, Emily, I think your ideas are not very progressive or open minded.

Stepmother-in-law: I just want you to explain your justification for your decisions about Aaron.

Me: (I lose it. Now shouting) I DON’T HAVE TO EXPLAIN ANYTHING TO YOU! MY SON DESERVES THE SAME HUMAN RIGHTS AS ANYBODY ELSE! HE WILL END UP IN A SEGREGATED SCHOOL OR A GROUP HOME OVER MY DEAD BODY.

Me: Storms out of the room. Rest of the visit with stepmother in-law goes as poorly as you can imagine.

Clearly I am not going to change this woman's attitude. But how many others are lurking out in society that feel our children are a burden, and not a gift?

I am

2006-09-19T15:40:00.000-05:00

Who am I?

I am a woman, a wife, a mother, an employee, a lover, a friend. I am a Virgo, a homeowner, a consumer, an accountant. I am a pet owner, a housekeeper, a caretaker. I am a writer, an artist, a voyeur. I am a liberal, a leftist, a conservative, a radical. I am a literalist and an interpreter.

I am a feminist, a modern woman, a high heel and pair of stockings. I am unshaven legs and lipstick. I am the epitome of emotion and the definition of rationality.

I am a giant belly laugh, a witty smile, and a tear running down my face. I am brazen, yet fearful; strong, yet weak. I am happy yet frustrated, fulfilled yet striving. I am wise and knowledgeable yet naïve and ignorant.

I am a walking contradiction. I defy logic.

I am a woman who is struggling against the labels that society has assigned to me and trying to reconcile those with the ones I ascribe to myself. I am a woman on an eternal shopping spree for meaning and definition. Sometimes I rent, sometimes I buy, and sometimes I return the labels and adjectives in my life.

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Most recently I am the mother of two children with special needs. My daughter, a delightful toddler, has Down syndrome and my infant son was born with a very serious heart defect that was repaired just after he entered this life. I am a woman whose only two children were both born with what are considered to be birth defects – an extra chromosome and a malformed heart.

I am a woman trying to balance my gratitude for the health and well being of my children against my fears for their futures. I am a woman trying to balance my awe for their beauty and my amazement at their accomplishments against my anger that they have had to struggle.

I am a woman whom was grateful that my baby daughter didn’t have a heart defect when she was virtually expected to…I was a woman whom was too grateful. Now I am a woman whom is tormented by wondering if my immense relief and self congratulation was just too tempting for the fates to leave alone; that they couldn’t resist sewing their ironic thread through our destiny as they wove my son’s birth on our family loom.

I am a woman still coping with the shock of my son’s diagnosis. I am only just now able to reach into my heart and touch some of those emotions; emotions I had to tuck away in the darkness of my soul for tomorrow while I dealt with the crisis of today. Those were feelings I was afraid would swallow me whole if I allowed them to see the light of day, and now their day of reckoning has arrived.

I am a woman who feels victimized by circumstance yet at the same time I am a woman who feels blessed by good fortune.

I am a woman that is probably pitied by strangers and whose strength is exaggerated by those that lead different lives.

I am a woman haunted by the tick tock of the clock, the constant reminder of how short my days are and how much needs to be done.

I am a woman who often just wants to cuddle with my lovely and amazing family and let the world pass us by, yet I allow myself to get so caught up in the mundane tasks of daily life that the moment can slip through my own fingers until its gone.

I am a woman whom loves life but sometimes forgets the adventure it should be.

I am a woman struggling to find myself yet trying not to forget myself either.

But most importantly I am me and I love me. I may not know who that always is as I wade through the labels of lifetime, trying them on like accessories for my soul; rejecting those that are just too expensive and finding perfect matches at the same time. My window shopping would just be so much easier if I could separate what I want to buy from what has already been purchased for me, but this, then, is just another life struggle…and it’s a good struggle. The struggle of self-evolution is never ending and I know that the moment I am able to define myself in one sentence is a life ending moment. Once I have stopped growing, I will begin to die.

For now I continue to shop around always wearing my favorite items on my sleeve …my husband, my children, my love, my truth, and, of course, the fullness of me.

Now…who are you?

What do you wear?

docile i am not

2006-09-14T16:43:00.000-05:00

Aaron was chosen as one of the three kids to be on a Down syndrome awareness bus ad this fall. His photo shoot was last night.

The two other children there were little girls, who obediently obeyed every single thing the photographer said to them.

They were picture perfect little models, posing and hugging and smiling.

There were bright lights, a lot of people, and noise. Aaron sat cooperatively in the chair beside the little girls for about 15 seconds. Then one of the girls bonked heads with him.
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Then he was done with the blasted photo shoot. For the next hour, he laid on the ground and wailed, picked his nose, ate the contents of his nose, screamed when a little girl came near him, yelled 'Mom! Mom!' when the photographer tried to adjust his position, ran around looking for the door, stuck his hands down his pants, sat with his tongue hanging out and kicked a hole in the background paper.

The picture you see above may be the best photograph taken of Aaron all night.

Thank god for the magic of cut and paste and Photoshop.

Aaron's part for Down syndrome awareness is making us aware that kids with Down syndrome aren't all docile. Many people with Down syndrome are super high energy and all have very distinct minds of their own.

End of Summer

2006-09-06T07:17:00.000-05:00

by Jennifer Graf Groneberg

There are signs that the seasons are turning: the midday sun is weaker on my face, the nights are chilly, a frenzy of squirrels cracks open pine cones all hours of the day and night. The leaves on the aspens are beginning to yellow. My garden has gone to seed. But none of these things tell me summer is over as much as the empty slot in the freezer door—the last box of Popsicles is gone.

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As usual, this summer was too much. Days that at once felt too long and too short. Birthdays (three), summer parties (two), afternoons at the lake (too many to name). And firsts: first bee sting (Bennett), first case of swimmer’s itch (Carter). All these things, so much to count, and yet I will remember this summer for what didn’t happen. I will remember it for what is missing.

Avery is still not walking.

I see other children with Down syndrome walk, even run, and I am taken aback. How is it that they do that? I realize that my amazement means I have given up on it, for us. At some point during these three years of trying, and waiting, and not-knowing, and worrying, I simply let go of it. My boy, who loves to be carried. My boy, full of hugs. My boy, near his mama. My boy who will not walk.

This summer he was fitted for braces. A thousand dollars, a thousand wishes. And still more places I didn’t think we’d go—to the Shriner’s, an organization that for my whole life meant nothing more to me than men in red fezzes riding around in little cars on parade days. Now, they mean aid. A place for assistance. Help. I don’t know how much I want Avery to walk until I feel the weight of it, the heaviness of him in my arms. I can not do it for him. I can not make it happen. I can’t do anything but hope, which feels like such a small thing. It might not be enough.

We practice taking steps over and over. Steps in my arms until my back is aching. Steps holding hands. Steps, and he stumbles. One definition of insanity is to do the same thing over and over again, each time expecting a different outcome. It is the shape of this summer’s days. Over and over, always expecting it to be different. Which is also, I have come to see, the meaning of hope.

The Popsicles are gone from the freezer. Time to turn toward the next season, with its Butternut Soup and braids of wheat bread. I think of kneading the dough, like I knead Avery’s muscles each night after his bath. Kneading, kneading. Hoping. Trying to find my faith in things like patience and repetition. Love. Time. All the right conditions. Trusting that like the loaves of bread, my son will rise.

submitted by Jennifer Graf Groneberg

Jennifer writes a column, Off the Beaten Path, for mamazine. She can also be found at jennifergrafgroneberg.com

drawing some circles for my boy (or, building a community, step 2)

2006-08-17T17:49:00.000-05:00

My husband and I sat down to do an exercise in community for our three year old son, Aaron, who has Down syndrome.

We drew Aaron in the middle. Then we drew progressively larger circles around him. The inner circle represents the people closest to him. The last ring, people who are in his life, but who function as acquaintances.

Our circles ended up horribly imbalanced. Aaron’s inner circle contained his dad, me – his mom, and his older brother and sister. Next came people who we knew would help us out with childcare in an emergency.

There were only two people in that circle – my mom and dad, who live 1,400 kilometres away. Oh dear.
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The rest of his extended family fall into two camps: those who care deeply for Aaron and show interest in him (the rest of my family, his Grandpa Barry) and those who do not.

What am I to do with these lopsided circles? Aaron’s community is not flush with supportive members. My mother-in-law suggested we ‘hire someone’ if we want a grandma for him. We actually lost friends, including the woman who stood up for me at my wedding, after Aaron was diagnosed with Down syndrome.

I am beginning to panic.

I have a button that says ‘love makes a family.’ OK, let’s start with that. Aaron has two close friends in the Down syndrome community. I’ll work on nurturing those friendships. I like the moms very much, and endeavour to invite them over for playdates and outings to the water park.

But they also have their own ‘stuff’ going on – worries, health concerns, anxiety over school. My local non-Down syndrome friends number exactly one – and she just moved across the country.

My desperation to fill in my boy’s community is causing me considerable anxiety. Have you seen the movie ‘I am Sam’? The main character, Sam (disability unknown, but he had some sort of developmental delay) – he had a group of friends, but nobody who was willing to care for him. My husband and I sat and watched that movie, our mouths agape, in mounting terror for our boy. I do not want him to be alone.

What am I to do? Continue to nurture our inner circle, yes. Reach out to other friendly souls. Making new friendships start with me but I find making new friends gets harder with age. Maybe mainstream preschool in the fall will help, but I have the sinking feeling I will be the ‘mom with the kid with Down syndrome.’

I look at my boy and I want to weep. He is full of so much joy – I only want him to be accepted for who he is and to be surrounded by people who love him. Isn’t that what we want for all our children?

Why it sucks to go to Babies R Us sometimes!

2006-06-28T17:31:00.000-05:00

A few weeks ago, I was looking through some old archives at an internet message board where I’ve been a member for approximately 6 years. The topic of the board centers around Moms with children born in January 2001 – a “Mommy Playgroup” if you will. And this particular playgroup centers on my “typical” son, and not my “special needs” daughter.

I found a post I had written about some of my difficulties early on with Jenelle. It was moving to see how far I’ve come – but also a reminder that this journey through the land of special needs is such a roller coaster of emotions. I thought I’d share parts of that post here, so you could remember that you once felt the same, or maybe that someone new to this experience will find comfort in knowing these feelings are very normal.

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August 19, 2003
(note: Jenelle was only 9 months old at the time, and at this time, we did not know she was having seizures. We just knew that she was "delayed" and did not have any other diagnosis.)

I haven't shared any of this here yet... I mostly post these feelings on the support group boards I've found for special needs kids. I just realized that I should share all sides of this with all of you and not just share Jenelle's updates and improvements, so here goes …

I had to go to Babies R Us last night to get some formula -they are the cheapest around for the bulk size of Good Start. It didn't bother me before, but now it gets to me. You see all these babies, grasping at things on shelves, sitting up, babbling, etc. Then you see all these baby gifts like baby books, milestone charts, calendars, teething rings, walkers, bicycles, etc. I look at some of the toys, and think, that might help Jenelle, and then see the age range is for a baby 0 months to 6 months and that reminds me again. That part of this journey is so hard.

Two weeks ago I hit my low, and posted about it at a special needs board. Everyone there understood what I was experiencing and I got some great feedback and support. Then that night, I went grocery shopping, and at the checkout the cashier asked if I wanted to donate a dollar to “Jerry's Kids” and I lost it again mumbling while fighting back tears that I had my own “Jerry’s Kid” at home. Friends of mine are pregnant again or have recently had new babies. It hurts to hear about their newborns and their recent accomplishments. I keep them posted about Jenelle, but I never share these feelings I'm sharing here. It hurts to hear that a 3 month old has mastered rolling, to know that Jenelle only started doing it last week at the age of 6 months. It hurts to hear a Mommy complain about her Baby pulling her hair, when I wish Jenelle would even take an interest in playing with mine.

I get over these feelings pretty quickly and remember this is a stressful time we are experiencing, and that I'm not the first parent to have a child with special needs. Then I go to Babies R Us for formula... and I’m hit with the pain all over again.

Just wanted to share that I am experiencing both sides of things. I know you all would understand.
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Remember the pain of the unknown? How do we overcome it – or do we just learn to accept it? These feels are still fresh, but the sting isn’t as painful. There is hope and things do get better. If you are just starting this journey – remember that! You will find a way to survive, and make it through!

My Own Private Gate

2006-06-13T09:36:00.000-05:00

I live at the end of a twisty gravel road in the mountains of Montana in a simple house, just two bedrooms, originally built by a man and his wife as a retirement home. They also built a gate across the driveway. It’s a thick wire strung between two steel posts sunk deep in the ground. When you pull it tight and hook it into place it feels final: gate closed.
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We’d lived in this house for almost five years before I felt compelled to use the gate. It was the fall that the twins came home from the Neonatal Intensive Care Unit; the first fall we’d been living with the news that our middle son Avery had Down syndrome. I was tired, then, so tired. I didn’t want to explain anything anymore to anyone, I didn’t want to put on a brave face, or not put on a brave face. I wanted time to get to know my new family, time away from the well-wishers, time out. I put up the gate.

Just the act of stretching the wire across the driveway made me feel powerful. I had some say here. I could close the doors, if I needed to. We could have a break, now and then. I could say no. It was incredibly freeing, and I haven’t forgotten that feeling. The gate, and the lesson of the gate, have stayed with me.

When I am feeling low, or overwhelmed, or simply out of answers, I put up the gate. I play with my children, I bake cookies, I listen to music. We read books. We dance. We wear our pajamas all day. I sometimes cancel our therapy appointments. I say the kids are sick, or that our car has a sudden, unexplainable flat. I feel a bit guilty about these lies, but what I get back is worth it to me—space. A place to reconnect with my family. A place to stop being the mother of a child with Down syndrome, and simply be Mom. It’s so easy, with the gate up. Our family behaves as a family. Everything is natural. I sometimes forget that there is any trouble here at all.

But of course life moves on, as it must. The gate comes down. We go out into the world. We resume our activities. I reschedule all the appointments. I carry on as the mother of a child with Down syndrome. It’s okay. Most days, I am fine. Most days, I can bring that feeling of normalcy out into the world, and try to swing things a bit more toward acceptance. It’s what I do; it’s what we all do.

But when I am not feeling up to it, I know what comes next. I pull the wire tight and start canceling things, until it feels like time to get back into the fray. My own private gate, temporarily up while I’m under repair.

Notice This

2006-05-31T18:45:00.000-05:00

“We don’t notice your CP Emma”

“When you’re sat on a regular chair you can’t tell that you’re disabled.”

I prayed and I prayed that my CP you would miss. It seems my prayer was answered. But now I wish it wasn’t.

I am Emma, not CP, but CP still affects me. My Prayer has changed, now I Pray that you will realise this.

What if I said this to you? I organised a trip and I’m sorry but I forget to check before I booked, and it turns out (surprise, surprise) that the boat can’t handle peole who don’t have disabilities. Wheelchairs yes, any sort. Sticks, walkers, mental impairments, mentally ill, hearing disabilities, visual impaired, all welcome. Able-bodied, *sharp intake of breath* no, love i’m sorry we don’t cater for them, no demand you see and the boat is listed - historical artefact can’t be adapted oh and really we just can’t be arsed to do it. The able-bodied just cannot go.

No, a lie they can go if they wish. But they must sit in a corner no bigger than [this] be seen and not heard but not really seen, have no drinks, no eats, no safety from the rain. You can’t get the loo well why did you think you would be able to, don’t you dare complain.

Basically that is what you’ve implied and said to me. If I said that to you it just wouldn’t do. Your shock and disappointment would be something everyone knew. As for me? I am disappointed but I’m not shocked. Somethings never change and so I miss out once again.

I'm an important part of the "team" at work I'm told but somehow you don't act like it. You tell me you wish I could go, that it’ll “Be Ok”. You tell me not to worry about it. But how can I not? Those steps may be only three, they may as well be thirty or three hundred, a step is a step. And that’s not wheelchair access. Oh how I love that concept “We have wheelchair access but three steps into the bar/restaurant/lounge/toilets” it’s not wheelchair access, it’s a barrier to me.

You can go and I can not. I briefly envy you then it comes to me that it’s not worth my grief. I could go if I were like you. But that would mean I didn’t have CP. And if I didn’t have CP, I wouldn’t be ME.

And if that’s what I must be to go, then quite frankly I’d rather not.

building a community for my boy, step one – moms at the school

2006-05-19T22:57:00.000-05:00

I am struggling to build a community for my little boy.

It amazes me how scared adults are of a three year old who is 31 inches tall and has the face of an angel.

I went to school to pick up my older daughter. Aaron toddled along beside me, happy to be out to step on cracks in the sidewalk and dig his toes in the playground sand.

The group of mothers standing by the door parted as we approached. Grown women look away, lest they make eye contact with me.

I know they don’t know what to say to me. They are terrified to speak to me because I am a strange creature. I am the mom of a child with a disability.
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I want to tell them that Down syndrome is not contagious. If they dare talk to me, they will not immediately become pregnant with a baby with a disability. I want to tell them that I’m just a regular ole mom, with a bit extra on the side.

My regular mom stuff includes helping with homework, shuttling kids to the mall, making dinners, and doing laundry. My extra mom stuff includes hosting a parade of therapists in my home, sitting on a support group board, taking Aaron to many medical and therapy appointments, and laying awake at night worried sick about his future health and how society will treat him.

Because at only three years old, I am getting glimmers of Aaron’s future. People scared of him because he’s different.

And that breaks my heart right in half.

How do I handle this without becoming neurotic, paranoid or resentful? Am I unconsciously telling people how to treat Aaron…to look away when we approach? Am I so cloaked with concern for him that I push people away?

Only three years into having a child with Down syndrome, I’m finding my way around this new world. Having a 12 year old and a 9 year old, I thought I had this motherhood thing pretty much figured out. But Aaron adds a layer of complexity that puzzles me. I am no longer like the other moms standing in the playground.

When we talk about integration for Aaron, I think I need to be integrated, too. Other moms need to spend time with me to discover I’m not that much different than they are.

Don’t be afraid of us, I want to say. We won’t hurt you.

One Half Turn at A Time

2006-05-18T16:51:00.005-05:00

I used to do whatever I could just to make my daughter Zoe grin, to hear her laugh. I wanted to erase the hurt of her hospital stays and make the disappointment of her disabilities go away. Until one day we were at a birthday party, and I stood watching Zoe's beaming face as she claimed her prize. She was squealing with excitement as I watched the birthday girl's mother hand Zoe a second "extra" prize. Curious, I moved closer to see the Mom's face and felt the slap of shock as I realized that her face was full of pity.
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Being outside that day had felt great. Zoe was having fun. She was managing her walker independently, and although I was close by her side, she was no different from all of the other little four –year- old girls madly running around the backyard. There I was celebrating Zoe's progress and independence as another woman was mourning Zoe's disabilities.

And that look on her face just wouldn't leave me. It stayed with me like a huge undone task on the top of my to- do list, a few weeks later we celebrated Zoe's birthday. And there were these presents, from our friends, big bags of Disney delight, over the top gifts for your everyday four- year- old birthday. But then again, this was a four- year- old with speech problems, muscle problems, kidney problems, brain abnormalities, a four- year- old who has physical and cognitive disabilities.

That night lying in bed, I thought about the different friends I have who like to praise me for my patience, for simply doing my job, for being Zoe's mother. Were they feeling sorry for me or offering support?

My journey as her mom, in these four short years has been long. When Zoe was a baby, I had more questions than answers. Back then, I wanted other people to see she was different; I wanted them to acknowledge and confirm what I alone saw., what my mothers instinct was telling me.

When Zoe was two, she was diagnosed with a mitochondrial disorder, a complex metabolic disease, and we faced the challenge of managing a progressive disease with no real prognosis. Her delays became more obvious as she began to walk with the use of a walker. She smiled a lot and would attract attention when we went out. I appreciated those kind words, the smiles and waves from strangers. even the "she's so cute" comments. I was still hurting, still grieving. The extra attention was soothing then, like a cool salve on an open wound.

But Zoe soon grew into the little girl she is today, and professionals began to document her "delays" as disabilities. I was the mother of a child with disabilities. A child I wanted to empower and not restrain with limitations; a child smart enough to someday realize that she is being treated differently from her peers, a child smart enough to perceive pity.

I have learned to manage Zoe's calendar of therapy appointments and doctor visits, to allow her time to play Barbie and beauty salon with her sister. I have learned to prepare for Zoe's annual Individual Educational Plan, making long lists of what she can do, to balance the many paragraphs that outline her needs. I have learned where the access parking is available at the local mall , and which parks have rubberized ground cover near their play equipment, so Zoe can navigate her walker as close to the other children as possible. I find myself acknowledging my child's disabilities so that we can utilize resources that will help her to experience normal, everyday life.

And within Zoe's world, I want the emphasis to be on her abilities, not her limitations. I want her to be treated just like any other little girl, without excessive praise or attention. I want to teach Zoe that she can make her own choices and live her life in the most independent way possible. I want to teach her she can do anything, and that isn't always easy, even for me. Last weekend our family went out for dinner. After we ordered our food, Olivia, Zoe's five-year-old big sister, asked to use the bathroom. I immediately took her, completed the task quickly, and we returned to the table. Zoe, still in diapers, greeted me with, "Bathroom, please, Mama?" The restroom was located in the far corner of the restaurant across a large and very full dining room. I hesitated for a second before replying, "Let's go, Zoe!" and off we went. In that second, anxious for dinner, I was dreading the trek through the busy restaurant.

Sometimes though, teaching Zoe she can do anything is completely natural, and I want others to see how easily she can find her own way, like when she plays dance party with Olivia. There they were the other day, dressed in matching dance outfits, feather boas and princess crowns. I watched them dance side by side across the tile on our family- room floor. Zoe, rocking her shoulders back and forth, back and forth to the beat, while Olivia sang, shimmied and twirled around her. And then ,Zoe singing along to the same music, began to spin her walker on the floor, twirling effortlessly, just like her sister, doing it her way, one- half turn at a time.

Submitted by Suzanne, www.specialneedsmom.com

Blogging Against Disablism Day

2006-04-29T17:12:00.000-05:00

Monday is the first Blogging Against Disablism Day

Click on the image for more details. Or read this post* of Lady Bracknell's or In The Deep, which is something I posted to my blog earlier in the week to read just why it is important that we do this.

I've been meaning to post about this for a few days but never got round to it. Then earlier tonight I found a quote which I thik says it all:

"Reasonable people adapt themselves to the world.

Unreasonable people attempt to adapt the world to themselves.

All progress, therefore, depends on unreasonable people."

-George Bernard Shaw

It's time we stopped putting up with acts that have an adverse affect on our lives and being treated like second class citizens. And as the quote says - the only way we can overcome disablism is by refusing to put up and shut up any longer. It's time to become what some people may consider "unreasonable" and fight for our rights.

May 1st. I'll be doing my bit. Will you?

*Prior to reading that article last weekend I had never heard the one in seven statistic however since then I've encountered it in more then one place. Including learning at Naidex that the RNID (Royal National Institute for the Deaf) publish a magazine called One in Seven.

Struggles with God - My Answer!

2006-04-11T17:20:00.000-05:00

When describing myself, I usually say "I'm not an overly religious person." I was reading my friend Kirsten's blog entry today entitled "Struggles with God" where she asks "Why can't he answer prayers the way we want?" after learning about the death of a child. As you can imagine, this subject hits home with me because it is a question I ask myself daily in regards to my daughter Jenelle. Mostly though, I usually just wonder ... "Why?", as in "Why would God to this to a child?"

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It takes a lot of courage I think to be angry with God, or more specifically at the way he lets things happen in life. I remind myself daily that I too could easily withdraw into a self pitying type of depression because of my daughter, and think that she has come into my life as some sort of punishment, or because I lacked something religious, or because I teased a retarded child when I was young. To me, this is an easy way out ... to push the blame on God. And yes, there are times that I've been angry with him for what he puts her through. Life isn't fair sometimes, and no one is immune, not even children.

My favorite quote about this comes from the movie "Rudy", when the Rudy character is talking to the Cardinal and Dean of the School at Notre Dame asking if he's prayed hard enough about getting admitted. The priest answers, "In all my years of religious studies, there I two constant things I know. There is a God, and I'm not Him!" ... then he says, "Praying is something we do in our time. God answers in his time." Which also means God answers in his own way too.

I finally found peace with God regarding Jenelle a few years ago now. Like I said, it is easy to put the blame on God for who she is, but instead I choose to focus on her purpose in life rather than her struggles. Instead of anger towards God, I see that sharing her life and story with the world has brought inspiration to others and has changed me as well. I see the beauty in her small accomplishments like someone who sees the beauty in seeing the Northern Lights for the first time. It is God's work, in the most profound way. And when you think of it like that, it is easier to accept his answer to your prayers, which isn't really what you were praying for or the answer you were expecting.

Lately with all of her new accomplishments, I get a lot of email responses like "Your prayers are finally answered!" Well yes, but not exactly. You see, when I pray to God about Jenelle, I never ask him to stop her seizures or to make her "normal", etc. I usually just ask God to continue to give me strength to be her Mother. Because honestly, Jenelle gets plenty of prayers about her medical condition... but in reality, having the strength to accept her is what keeps me going. And yes, God does answer that prayer daily - if he didn't, I'd probably be a mess! However, I am enjoying her new accomplishments as an added bonus!

So while it is difficult to understand why God answers prayers in a certain way, remember that sometimes the answer has a deeper meaning, or that the prayer has been answered another way. Thank you Kirsten for making me think about that, especially this week.

A Different Kind of Normal

2006-04-09T16:11:00.000-05:00

I just read a story in a new parenting magazine called Wondertime. The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.

The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.

The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child:
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The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.

Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.

Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."

That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."

Respect for All

2006-04-08T17:19:00.000-05:00

I believe that disability awareness is a very good thing, as is acceptance.I also believe that some people who harp on about how people need to be more aware and/or accepting are hypocritical.
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Someone I know (but don't know that well) and his partner have recently spent a considerable amount of time talking to me about how it isn't fair the way disabled people get treated and everything we have to go through.He had a stroke a few years ago.

Yes, disabled people deserve respect.I agree with that.Yes, we should be treated the same as normal people.I agree with that, although I don't agree with the term "normal" in this context.I wouldn't say that everything I go through isn't fair.Then this is where my perspective differs as I've been disabled from birth and disability is all I've ever known as a lifestyle.

Unfortunately, it's not the only point on which our opinions differ on this issue.Because then we come to Lucille.

When I was 16 I met Lucille, and we became great friends.We shared a taxi to college and even though we weren't on the same course, we often saw each other during breaks and got on fabulously.Lucille is also disabled, because she had meningitis when she was four.She has some physical difficulties and uses a walker.She also has learning difficulties and although she is 24 like me, she has a mental age of eight or nine.Neither of us are at college any more and we didn't see each other for a long time.I cried my eyes out that last day at college because I thought I wouldn't see her again.

Then I started going to a disabled swimming group with Ryder Cheshire Volunteers.Then a few weeks later Lucille started going to the same session with a group she belongs to.Our friendship continued as though the four years that had past were four days.

I go every week, she goes alternate weeks.So one week I swim seriously and the second I swim a little, I chat, I tease, I joke, I giggle and I hang out with my friend.I have a great time.I look forward to those Friday's because I love Lucille to bits and spending time with her always makes me feel better about myself.We usually get together in the coffee shop for a coke and some chocolate and chatting after swimming.

We were sat there the other day with the people who I'd talked about awareness with. Lucille had been sat at the table talking with them before I got there and shortly after that, she went to get a drink.Whilst she was gone from the table, one of my supposed friends turned to me and said "Lucille's been telling us about her family, is that true?"How was I supposed to know?I don't know everything about my friends lives.If that's what she told them then it's true and to doubt her is incredibly disrespectful.

Then they laughed at her when I asked her a question when she was eating and when she had finished she told me "it's rude to talk with your mouth full."It is rude, but it's ruder still to laugh at someone and go "she knows, see" like your surprised that she has basic manners.In fact, that appears to show that she has more manners than they do.

After a while we got onto disabilities and she explained about her disability, they commented that "she just wants to be normal poor little girl."Now, I'll forgive their calling her a little girl for she is very short but she is not a poor little girl.In fact, I was so proud of her.For she sat there and said, "I'm only disabled because I had meningitis, if I hadn't had it I wouldn't be disabled.But it's OK, I'm here."

I don't know many people who could sit there and say that.How they got "she just wants to be normal" from that I don't know.

Lucille might have learning difficulties but she is intelligent.She can deal with the money in her purse and read what number it is to get her chocolate from the vending machine just as well as I can.Hell, she often ends up helping me as I can't always reach it to get it out of the tray.She can write, read a little, swim, use a computer, goes to the gym, helps to look after her nieces and nephews and plays bowling along with loads of other stuff.I love Lucille to bits and I wish more people were like her.At times she may be a little naive but it's part of what makes her who she is, and when it comes down to it she knows what matters and what counts.

My friends with the problems about people treating them with respect ... they don't know what matters.Respect is earned, not given and if they can sit there and be blatantly disrespectful to someone they know is one of my best friends because her disability is greatly different to theirs then I'm not going to respectful to them.

If they want respect because of the disability of one of them/the status of the other as a carer they have to respect others with a disability.Because if they respect those with a physical condition but not those with learning issues, they are just as bad as those able-bodied people they were complaining about.

My acquaintance deserves respect, I deserve respect and every Tom, Dick or Harry deserves respect regardless of disability or not.Lucille deserves respect too.

Respect, acceptance and access are things all people deserve.However, I want it for everyone, not just those who have a type of disability similar to mine.Until people (including those with long-term illness and physical disabilities) realise that that people with learning disabilities are just as deserving if not more so of respect and acceptance the fight for it isn't going to be over.It seems to me that we've only just begun.

If we respect those with a physical condition but not those with learning issues, we are just as bad as those able-bodied people we were complaining about.Something that is nothing if not hypocritical.

Lucille, I know chances are you will never read this but I just wanted to let you know how glad I am that you are in my life.You are one of the strongest people I know and you have a talent for helping me without realising it.Love you honey xxx

fancy schmancy

2006-04-04T12:48:00.000-05:00

Like our new look? Go thank Heather (Heart Mom), who donated the template, or go visit her web design and hosting company, Swank Web Style. Heather's also started a new webring, Miracle Moms, if you'd like to join up.

Advanced Maternal Age

2006-03-30T20:25:00.000-06:00

When my doctor told me that he wanted to test my new baby for Down syndrome, my head started ringing, time stood still and I tried to remember to breathe.

Aaron would have his blood drawn and analyzed. The results would return in an excruciating two weeks. I looked at the lab requisition. My doctor had written in big letters: ADVANCED MATERNAL AGE.
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Maternal. Oh. That's me. Advanced? Ouch. Well, I was 35 when Aaron was born but only 34 when he was conceived.

My myth-filled mind started to rationalize the situation. Only women over 35 had children with Down syndrome. Right? Right? Please, somebody tell me that's right.

(Actually, that's wrong. Now that I’m an expert on all things Down syndrome, I know that the 80% of babies with Down syndrome are born to women under the age of 35. This statistic busts open the myth that only "older" moms have babies with Down syndrome because of this interesting twist: more women under the age of 35 are having more babies than "older" women. Hence there are more ‘young’ moms than ‘old’ moms).

But in my reeling mind in my doctor's office, this "Advanced Maternal Age" business was starting to piss me off. My grief process kicked in. Denial: I wasn't over 35 when my baby was conceived; therefore my baby cannot have Down syndrome. Anger: How dare my physician call my age "advanced"! What does he know?

I’m a young chickie! I'm my husband’s young trophy wife! I haven't found any white hairs in my head yet! I like "Green Day" music! My doctor has clearly lost his mind.

Fast forward three years. My baby, who does indeed have Down syndrome, celebrated his birthday today. Yesterday he had a playdate with a friend with Down syndrome – and his mom was only 21 when her baby was born.

Even if my chronological age creeps up with each passing year, Aaron keeps me young. He's forced me to be a whip-smart advocate, fierce myth buster, and nimble cheerleader who applauds wildly for every single baby step.

Happy birthday, my dear Aaron. Your old mom (and even more ancient dad) love you very much.

spring cleaning

2006-03-29T23:45:00.000-06:00

If anyone would like me to change their contributor name (or if I have overlooked anyone's name), please drop me a line (moreenaATgmailDOTcom) to let me know. Also, if you have other blogs you would like me to include in the links section, let me know. Mainly I just want to be sure I've kept up with everyone, and that everyone's information is current. Thanks!

Starting Over... Again

2006-03-29T09:42:00.000-06:00

Its funny how when things are going good for our children, we forget how sick they really are. Or do we just ignore it and live in the bliss of their current health? I am not sure, but I know that this last few months has given me a reality check on that topic.

Emma Grace spent all of January in ICU. We had 4 years of almost normalicy regarding her transplanted heart. Her function had been normal, her biopsies never showed rejection, until December 31, 2005.

Over christmas we had noticed changes in Emma. We noticed her heart rate was rising, her activity had somewhat lessoned, but most of all her weight had increased significantly. The positive mother in me needed to believe that she was just gaining weight like a champ, and that I should be grateful for her chubby appearance. The skeptical mother in me couldnt deny that this was a big change for my very very thin little girl.

We cut our trip short to my parents and headed home on December 31st. Our lives changed drastically that day... again.
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Once we arrived home, Emma's heart rate was 165. Her respiratory rate was in the 60's. We went directly to the ER. At the hospital, they informed us that Emmas heart function was "significantly compromised". They did a chest x-ray and found that her left lung had partially collapsed and she had pneumonia. She had no cough, no conjestion, no signs of pneumonia, which had always been present with every other episode. Her heart, stomach, liver and lungs all had fluid build up. Long and short, our angel was, once again, in heart failure.

We were stunned. We had arleady done this once before, we knew her odds, and again we started bargaining with God.

We spent the next month in the transplant hospital over an hour from our home, my mother in law moved into our home to take care of our 2 other children, we rented an apartment by the hospital and settled in for the unknown.

Emma was diagnosed with Transplant Related Coronary Artery Disease, and was re evaluated for another transplant. She laid still in a big girl hospital bed for almost a month (did I mention she was discharged for a breif time, turned blue and had to be life flighted back to the hospital? I never want to experience that again)

We have decided to try to get as much out of her current heart, using medications, before attempting another transplant. She is now in rehab 3 days a week to build back her strength so she can sustain another transplant surgery.

Thru all of this, I have experienced anger, depression, sadness, pity, anger and more anger. I have learned how strong I truly am NOT. I have watched my little girl fight for her life, again. I have fought with doctors, family, my husband, myself. I have crossed lines and mended relationships, but most of all I have been reminded of how fragile my daughters life is.

I have learned to yell at God when I feel I have no one to yell at.

Cherish your moments. Cherish your children. Do not ever become complacent or secure in their health. Marvel at their success and weep in their shortcomings.

Most of all, be real in your pain.

Just Trying

2006-02-18T17:33:00.000-06:00

I'm just trying
To be me
So much more than
The girl they see

I might have this thing
They call CP
But that isn't
What defines me.

I am different from you
But I think I have it best
I need a wheelchair and always will.

Now I am different
But eventually
You will be
The same as me.

Thanks to the great equaliser called life
One day you too will experience this kind of strife

When you are old
You will understand what you've been told

But for now
I will try and explain it somehow.
Yet it is difficult to show
That which I innately know.

I have to spend
My life of wheels
My CP will never end.

I can live with it
Or long to be without it
The choice is mine
To be made with help divine.

When I was a child
I wanted to die
Life with CP
Seemed too much for me.

Time heals
What was once a punishment
Isn’t any longer
Instead it makes me stronger.

If when you get old
Your health time steals
And you must spend your life on wheels.
Remember what you have been told.

Hold your head up high
It will become normal as time flies by
As you learn how to cope
Don't lose hope.

I'm just trying to be me.
Can't you see?
Being me
Happens to include
This thing called CP.

Becoming a "Charity Case"

2005-12-20T17:15:00.000-06:00

Until I had my daughter, I never knew what it was truly like to be the recipient of charity. It is an emotion that is truly quite difficult to describe because you have to give so much of yourself just to accept the charity in the first place. I'm sure the victims of the recent disasters are going through these emotions at this time of year. You want to say "No thank you, give it to someone else who needs it more", but then someone convinces you that you need these things too.

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When Jenelle was first diagnosed with Epilepsy, things moved very quickly. She was in the hospital by the end of the week receiving a steroid treatment by injection, and I had to take time off work to keep her out of daycare because the steroids killed her immune system. Everything was happening so fast, we just lived on auto pilot most of the time. Some of my time off had to be taken without pay, so things were tight. We were not flat broke by any means, but it was tough.

A friend brought over some dinner one night to help us out, and unfortunately our oven was broken. hadn't been working for a few days, but didn't have time to call someone to repair it, let alone think about how to pay that bill. I couldn't even heat up the dinner because I didn't have an oven. The next day, the same friend sent a repair man to our home and paid for the repair. They also went to the grocery store and bought groceries for us. This was our first taste of charity, and it warmed my heart. The fact that they just took the initiative to do something without asking what I needed first was so overwhelming, and yet so needed because we obviously had our minds elsewhere.

The next month was November, and we started into the holidays very quickly that year. By then, we were over our shock and we were getting used to our new routine with Jenelle. She was off the steroids becaus they didn't work, but still was immune compromised so I remained at home until just before Christmas. Shortly before the holiday, we got a night off and went to a birthday party for a friend of ours. At the party was a mutual friend who was also a teacher. She had a surprise for us. She had taken it upon herself to have her 3rd grade class "adopt" our family, and in two cars she brought bags of groceries, diapers, wipes, fruit snacks, pasta, soup, cereal, grocery store gift certificates, etc.

She gave us a copy of the flier she had given her classroom families, and it told about our 10 month old child who was seizing uncontrollably, and how we'd been living in and out of the Children's Hospital the past two months. It talked of our son, and how it was hard to try to keep the home life normal during a time like this. When reading it all on paper, the emotions were overwhelming. The families were so generous, it brought us to tears. Immediately we felt we couldn't accept it - surely there were other families that could use this kind of generosity. The teacher said, "Yes, you can and will accept this. We did this for you so you won't have to think of the "little things" for a while.

It was an amazing experience. Once we got everything home, it took me hours to sort through it. I just kept looking at the food and couldn't stop crying. We decided to keep half, and give the rest to the local rescue mission. And even with taking only half; the non-perishable food lasted for 9 months or more and the diapers lasted for 5 months. It was a humbling experience, and yet so truly wonderful.

We never told anyone but our families about the wonderful gift that 3rd grade class gave us that year. We thought people might be offended because we weren't "poor enough" and we didn't want it to seem as if we were bragging, or worse, begging for more charity. We accepted the gift, and realized that in life we all should help each other from time to time. The hardest part about accepting charity is first admitting you need it.

Because our daughter is a special needs child, she still receives charity at this time of year. Last year a local Title Company gave her school backpacks filled with musical instruments and toys. Most of the contents of the backpack I used for stocking stuffers, and the rest of the toys she couldn't use I sent to "Toys for Tots." I realize organizations like to help the mentally retarded and the blind especially at this time of year. Just this week, I received an email from our local Epilepsy Alliance about some food baskets that had been donated for families like ours. This year we are blessed that we are not going to and from the hospital or emergency room, or trying to celebrate the holiday with a seizing child.

I'll say it again, the hardest thing for anyone to do is to say, "Yes, I will accept this charity gift" especially when you didn't realize you needed it. Thank you to all who go that extra mile to make sure others less fortunate in circumstances will have one less thing to think about this Holiday. We will never forget that special gift, and in return we will not forget others who may be experiencing difficulties during this holiday season. I hope you don't forget them either.

November is National Epilepsy Awareness Month!

2005-11-28T13:43:00.000-06:00

Before November is over, I thought I'd remind everyone that November is National Epilepsy Awareness Month. Usually when I announce that there is such an awareness month, many people tell me they had no idea such a month existed... Which proves there is a need for awareness.

We are all here because we have a loved one with special needs (or because we are someone with special needs.) As you can see, the disabilities here are very diverse, however, seizures are unfortunately very common in all types of special needs disabilities. So although some of us are different, we sometimes share the same problems. We need to find a cure for seizures and Epilepsy.

Rather than take away from this blog, and the wonderful posts that are written, please click here to read more about National Epilepsy Awareness Month - before the month is over! ;)

I hate IEP meetings.

2005-11-19T20:39:00.000-06:00

(IEP=Individual Education Plan)

I haven't always hated them. Back when R first started pre-school they were a breeze. He couldn't really do any of the things pre-schoolers are supposed to do, so we just set small, seemingly attainable goals, smiled, cracked some jokes, tossed our copy of the forms in the backseat, went to Target.

But then R started meeting the goals. Which is good, right? I mean, it seems to be important that a child sit when and where he should sit, that he feign interest in the poorly executed dreck of a story, that he clap when the others clap, or snap or stomp or wave or point. Fine. R can do those things. Hooray.

I worry now that these goals, these attainable, important goals may be sucking the very life out of him. Sucking out the very Robbiness we all know and love.

I volunteered in his classroom the other day, and, man, what fucking chaos. The room is teensy-tiny and inhabited by ten boys and just the two little girls. And it was deemed too cold to play outside. Those boys needed to play outside, cold or not. They were insane. Absolutely insane. Itching to use their large muscles. Since they could not, they decided to yell a lot and throw things.

Now, I am not used to groups of children of any size. I am used to just my one boy. My one thoughtful, sweet, easy-going little boy. And he remained my one thoughtful, easy-going boy all day at school. He wasn't interested in throwing toys at the other boys or yelling or being insane. I think he wanted to do Math. There was another one thoughtful, easy-going boy, called Josh. All he wanted to do was Art. He was adorable. He sat with me for a long time cutting and gluing and having an excellent time with ground cinnamon.

So I wonder, now that R can do the sitting thing and the feigning interest thing, ought he not be challenged to do more? He is freakishly smart. Shouldn't we teach him things, like Math? He loves to paint and read and write. Just because he isn't talking communicatively at school, well, is that any reason to make him stay in this class and feign interest for three hours?

I can see him having a much better learning experience over-all in a smaller class with more one-on-one instruction, with children who are interested in academics, who like to read and write, who want to learn.

I remember, when R was newly three, our visit with the Speech Guy at Childrens'....he told me that it was Bad that R could read before being able to talk. It's called Hyperlexia. Okay, yeah, wtf? How in the fuck can it be Bad to know how to read? HOW?! Not buying it. Didn't buy it then, won't ever buy it.

Anyway. Just thinking while typing.

Here are some online samples for those of you who are not familiar with the format.

Burden of proof

2005-11-15T14:48:00.000-06:00

CNN: High court rules against parents in special education case

I suppose I shouldn't be surprised, and I'm not. Also, I understand the argument that the schools are trying to make, about a flood of lawsuits flooding thair resources.

But I don't think as special needs parents, we are all just lying in wait for the opportunity to sue the pants off the schools at the first sign of non-compliance. It would have been nice to see the burden of proof put on the entities that have the resources to defend their academic choices, rather than on the parents, most of whom eventually get put in a position where they run out of options and simply accept whatever the schools give their child, appropriate or not.

The burden is on the parents. Thank you, Supreme Court. And don't worry your pretty little heads about us. Nothing's changed for us. We'll still fight for our kids as best as we can, because unlike the schools, we don't have a choice.

I'd of had to miss the dance

2005-10-28T12:43:00.000-05:00

This is another one of my older pieces... I wrote this about a year ago. It's based on a discussion some of us had about medical conditions, how you deal with them and that alien concept of "a cure"
click her to read I'd of Had to Miss The Dance
I have cerebral Palsy (CP) or to give it the exact diagnosis Spastic Cerebral Palsy Diplegia. I've had it my entire life and I've had to use a wheelchair to a certain extent my entire life. I think I find it relatively easy to deal with the majority of the time because I have never known any different. I've known what it's like to be able to walk a slightly longer distance than I can now but I've never known what it is like to run or jump/ I have known what it is like to be able to walk without the fear of falling over and hurting yourself that I sometimes feel when walking in crowds now. But that was when I was six years olds and all six year olds are invincible, nothing will happen to them, they won't get hurt. Or so they think.

Now though I am 22 and I know I'm not invincible. I have suffered the scraped knees, bumps on the head and suspected broken bones that can result from the falls which are a part of day to day life if your balance is as bad as mine is. But I don't let that fear stop me. That fear is a very healthy thing for me, I believe, but only because it doesn't stop me. Instead it keeps me safe to a certain extent. Because I choose to deal with my CP by being very upfront about it, by viewing anything that can help me as a good thing and simply getting on with it.

Until I was 17 I used to walk the short distances I can handle unaided and spend the rest of the time in my wheelchair. I would grab onto the walls, the furniture or other people who happened to be around whenever I felt I was losing my balance. But I would always be too frightened to walk very much even though I wanted to in case I would fall so I would pretty much be in my wheelchair unless my parents or someone else in authority insisted that I walked. Then at 17 I got a rollator (walking frame) again for the first time since I was five or six. I also took a few minutes to explain to people that would be around me when I was walking about my limitations - to make sure they knew not to cut infront of me suddenly (I can't stop suddenly without falling although my walker helps a lot with this)., to make sure they knew that sometimes i do just fall for no apparent reason because that is part of what CP does. And I wouldn't say that I've completely gotten over my fear, I'm still nervous the first few times I walk in a new place or if I don't feel 100% well. But with that walker and by telling people about my CP and my walking I am able to feel that fear - but do it anyway.

When it comes to acceptance I believe that I'm as close to fully accepting my disability as I ever will be. Like i said above, i have never known anything other than having CP and although my condition may appear to others to have gotten worse, it is not something I have had to struggle to accept because that deterioration was something I choose to allow to happen and I know that in a way it was a good thing. I began to use my wheelchair so much more because it allowed me to do more, I didn't get so tired and I could get to classes at uni quicker. The problem that has come about as a result of that is that I can no longer walk as long distances as I used to be able to. So it could perhaps be said that my CP is worse. But I know that it's not really, and I know that if I worked at it I could get it back to a certain extent. I am working on my walking to make sure I don't lose the amount that I still have and I'm trying to gradually increase the number of times a week that I walk short distances. However I'm also a realist and I fully realise that my CP will never go away and there will always be decisions to be made and opportunity costs to weigh up about the way I live my life with my disability. So walking will always be very tiring for me, will make my legs hurt after a few minutes and be slow. Using my wheelchair solves most of those problems for me (and if i use my powerchair the speed problem is solved too) but the cost is that sometimes I use it when I could walk and then I gradually may lose some of my ability to handle distances walking, i may have more pain or i begin to walk slower. But if I'm not so tired and I can live a fuller more active life simply by spending 95% of my time in my wheelchair then it's a price I'm willing to pay.

I think that shows how much I have accepted my disability, something whihc some others might not understand me saying. I know some people who have CP and walk all the time with a mild limp or poor balance or whatever who say they hate having it and I think that maybe that stems from how well (or not) they have been able to accept the hand that life has dealt them. Obviously I am not in any position to be able to judge people and say for definite that is why but from my experiences and what I've seen I would assume that is why.

I use humour in a lot of situations as a way of helping to deal with it. I can't remember the exact quote but I once read something which said the one way to definitively take away the power tha insules and derogative terms have over you when someone tries to use them to get at you is to use them yourself. If i refer to myself as a spastic or a cripple it isn't hurtful any more and even if someone says it to you meaning it to hurt you it won't - it's lost its power and it once again appears as just one little word which can't do anything to hurt you. and that's how it should be.

But my using terms like spastic and cripple for humour (like telling my sister I was a club class cripple today because I got upgraded to club class on the train) is something which most able-bodied people don't understand. One of my counselors decided that it was a self protective mechanism that really the terms are hurtful to me and I must hate them i just pretend to find them funny as a way of avoiding having to feel that pain. she couldn't accept that that wasn't the case and so I never went back to her again.

The last time someone called me a spastic and actually meant it as derogatory (my sister called me a spastic for a joke the other day), I just smiled at them and said "that's right I am a spastic, I've got that form of CP." and they were just completely thrown off by that.

Spastic. S P A S T I C. Cripple. C R I P P L E. Two words which are meant to hurt me, which are meant to upset me. But do you know what both of those words represent to me... seven little letters in each of those words which spell out a whole lot of fun and laughter.

I've said it before, and I'm sure that I'll say it again. Political Correctness sucks... humour and laughter are the only way forward. Because there are times when if you didn't laugh about all the rubbish that life with CP throws at you, you would cry and I'd much rather spend my days laughing than crying!

Of course there I would be lying if I gave the illusion that there aren't days when it gets me down and I need a good cleansing cry to get it out of my system. But those days are now (thankfully) rare and the giggles far out number the tears. I think you need to have the down days because how else would you appreciate the good days if you didn't have bad days to compare them too? I really do believe that you don't know what you've got till it's gone.

If i was ever offered the chance for someone out there to wave a magic wand and make it so I had never had CP i would turn them down. It's been one of the most formulative experiences of my life - I like who i am and I wouldn't be the girl who sits at this computer writing this if I wasn't disabled. CP is just a part of my life, it's a very important part of my life which I'm proud to have, but it doesn't rule my life totally it just influences it - for the better I believe. It's like I wrote in my CP Rocks poem, how would I be me if I didn't have CP?

I think a lot of people can understand that. Everyone has painful or difficult experiences which at the time you wish hadn't happened but afterwards time brings the wisdom to see that they had to happen for them to grow as a person and become the person they are today. What I think a lot of people would have difficulty accepting is this...

If I found a magic lamp, rubbed it and out popped a genie offering to grant me three wishes like in Aladdin and suggesting that one of the wishes were to make it so I had had cp up until this point but that I no longer had it and from this day forward I would be able-bodied, I would turn him down.

I like who I am - wheelchair, muscle spasms, back pain and all - and I wouldn't want to change it for the world.

So many things I have done and people I have met I wouldn't of had the opportunity to do or meet if I hadn't had CP and so for that I am grateful that I've got it.

I think Garth Brooks said it best in his song The Dance

"This life is best left to chance
I could have missed the pain
But I'd of had to miss the dance."

Anniversaries v. Milestones

2005-10-19T16:54:00.000-05:00

I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.
Please click here to read more
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.

On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.

I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.

Meet my Jenelle

2005-10-06T13:38:00.000-05:00

My name is Kelly, and I am a married mother of two who also works full time as a litigation paralegal in a large law firm. I found my way here because our youngest daughter Jenelle has special needs. That sentence seems so simple and yet there is no easy or simple way to describe my child. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

please read more about Jenelle's Journey
Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive issues that did not surface until recently. Developmentally, she cannot sit up, does not use her hands to hold anything and does not talk –yet she makes babbling sounds and started gracing us with giggles this last May. She will be 3 later this month.

Jenelle was born at 37 weeks via planned c-section after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks and was primarily caused by a kidney infection that I had at that time. I was put on Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists soon followed. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. Jenelle finally gained seizure control sometime in late July 2005. We aren’t sure what is working exactly but we’ll take it.

I remember the first time I read “Welcome to Holland.” I cried for hours and understood the beauty in its message. It helped me to come to terms and realize that I needed to be positive and strong about things for Jenelle and my family. I also remember one stressful day when a well-meaning friend left a copy of “Welcome to Holland” in Jenelle’s cubby at school. It was the first time I really “hated” reading it, though for the life of me I can’t remember exactly why. I remember that I wanted to scream, “Holland sucks and I want a refund! I want to be in Italy drinking wine and buying leather shoes like I planned! Where can I file a complaint against this fricken airline, and how can I get my money back!” I know each and every one of you has felt this way too.

So, thank you for including me on this blog. I’ve been writing updates about my daughter since her seizure diagnosis over two years ago. It is very therapeutic for me to put things in writing, and I hope that by sharing those thoughts with all of you I can help you see that you are not alone. They say the first year with a special needs child is the hardest, and I wholeheartedly agree. I’m not sure if things really get better or seem better, or if we just have to take a year to learn the ropes and understand. Today I feel as if having my daughter makes me a better human being. I hope you feel the same. Thanks for reading about us and best wishes to all of my fellow citizens in this land called “Holland.”

Sniffles

2005-10-03T22:17:00.000-05:00

Certainly there are things that are far worse, but life with a child who is slightly immunodepressed can be exhausting.

Sleep - for all in the house - is hard when a child has near constant colds, sinus infections, or bouts of diarrhea.

And there's the constant concern: will she get sick from this? And if she does, will we end up in the hospital? All the worry is exhausting. It's so hard listening to your child struggling to breathe around so much mucus, and knowing that this might last for weeks - or months. Poor, poor baby.

Humorously, between when I wrote this and when I posted it, Ellie seems to have (so far!) missed the flu going around her school while I caught it. I am not enjoying the flu, but at least I can handle a couple of days of it without my electrolytes getting so out of whack that I end up in the hospital on an IV. I'd take these illnesses for her any day, everyday.

More on Holland

2005-09-29T23:31:00.000-05:00

Reading the two posts below about Holland got me thinking more about the essay. (I commented here and somewhat passionately here.)

Recently, I learned something cool. The author, Emily Perl Kingsley, was a writer on Sesame Street before she had a son with Down syndrome. When her son was about kindergarten age, he (and another boy with Down syndrome) became regulars on the show. How cool that a whole generation of children grew up seeing children with Down syndrome integrated into normal life routines on Sesame Street!

When he grew up, Jason Kingsley wrote a book with another young man who has Down syndrome. What an amazing accomplishment. It's on my bookshelf; I'll review it after I've finished it.

I Come With Wheels

2005-09-04T22:40:00.000-05:00

This was the first ever essay piece I wrote about having a disability. It was written sometime around September in 2003. I may have touched in the issues in this essay in previous posts and I think I have shared one of the anecdotes before But I felt that this is the piece which is probably the best at showing who I am and more importantly it shows how my writing has developed.

Read "I Come With Wheels"

Crippled, disabled, spastic, stiffy, handicapped, weirdo, diplegic, cerebral palsy sufferer, abnormal, disabled, freak.

A whole host of different ways to describe who I am, what I am. But none of them are important, not one of them matters to me. To other people those labels are the only ones that matter. My immediate family and my friends and I all realise exactly which label is the most important and of course, it’s the one word that’s never on the list, the label that’s always overlooked.

What is that label? Simple. It’s Emma. Because that’s my name. That’s who I am.

I am 21. I am student at university studying for a degree in Business Studies. I am from the UK and I have a younger brother and a younger sister. I love partying, shopping, swimming and the Internet. I get by with a little help from my friends, there’s a lot more of me then meets the eye.

It has taken me many, many years to realise that yes, some of those hurtful labels do apply, yes I am disabled, yes I do have spastic cerebral palsy diplegia, but it doesn’t matter. Others may see me as an object of pity but I don’t need their pity and no matter what they think, I know that for a fact.

Yes it did take years of hurt every time I realised just how different I was. Crying and screaming at the injustice of it all. When all I wanted was to do something so simple that meant nothing to the able-bodied people who surrounded me, but which meant the world to me. I would try my best, give it my all, but I wouldn’t succeed.

I would feel like the world was mocking me:

“What gave you the right to think you could do that you poor little girl? You’re a freak, Emma, an abnormal person in a chair with wheels. You have cerebral palsy. It’s all you are, all that will ever matter about you.”

That’s what the stares whispered to me, what failure represented.

Now though, 21 years since my birth 6 weeks prematurely, and 19 years since my parents received that devastating diagnosis I’ve mostly learnt to rise above all of that, to focus on the positive and never the negative. To do what I want, to ignore the fear of failure.

Well, most of the time anyway…

I am disabled. I am not a “normal” person. I have a “problem”, I am “different”, however you want to put it, it all means the same to me, even if it doesn’t to you. Days go by when I hardly give the fact that I have CP a single thought.

I have Cerebral Palsy. So what? The stuff other stuff I wrote about myself is so much more important then that. The CP is just part of my life, the rest of it is my life.

That’s not to say there haven’t been times when life has been hard, but that’s true for anyone, CP or no CP.

Do me a favour? Don’t ever refer to me as “suffering” from Cerebral Palsy. To suffer is defined as to appear at a disadvantage, to feel pain or distress. At times I am in a lot of pain and I can get very upset about stuff. But it’s never the CP that I’m upset about its all the fighting that goes with it. I probably appear to be at a disadvantage too, but there are advantages too and quite good ones at that.

Nor do I have an illness. An illness is something that is wrong with you. What I have is a lifelong disability and an it’s not something that is “wrong” – for me it is what is right. I have never known life without CP and wouldn’t know what to do with myself if I woke up one day and was able-bodied.

Just because I am different to you that does not mean you have the right to start questioning me (or worse whoever I am with) about every little aspect of my life and my disability. I don’t mind talking about it but it’s not really any of your business.

When I went home for the Easter holiday in my first year at university I went on a trip to London with my Dad and brother. We were sat on the train home, my brother was sat next to me and my Dad opposite next to an older lady who was travelling alone. She had obviously seen us get on together and after we had been sat there for a while started asking my Dad about me. “Is she your daughter?” “What’s wrong with her?” “How old is she?” He answered all those questions with one or two word answers, probably not wanting to tell her but resigned to the fact that people want to know all the gory details. Then she asked another question:

“Can she hear and speak?”

Dad just snapped “She’s at university” and turned away. My mobile rang and I answered it laughing inwardly at the woman’s expression as I spent the rest of the journey chatting away to a friend.

As I said before, CP is simply a part of my life; I refuse to let it become my life. There are some advantages of it though.

I enjoy using my wheelchair. It’s good fun and I never have to look for a chair or stand for long periods of time. If I’m feeling a bit active there’s always the opportunity to use my walker for a little bit. Then if I’m feeling very adventurous the thrill of taking a few steps unaided is one that has to be repeated time and time again to reach its full enjoyment potential.

Next there’s the times when you’re with some sort of disability “specialist” who has been told time and time again that words like “cripple” and “handicapped” are not politically correct and should not be used and you’re going “blah blah blah, yeah I’m a cripple.” I did that yesterday when my physiotherapist was here and he didn’t know whether to laugh or be shocked at my attitude. It’s very amusing and I recommend it.

The ability to say “yeah, look at me, this is who I am” was one that has taken me many years to develop and I’m not sure I’ve got it 100% of the time even now. It’s an ability I am proud of though, one I am glad of even though sometimes it is still too much for me to manage. It’s like Gloria Gaynor sang:

“Life’s not worth a damn
till you can say: I am what I am”

For many, many years should someone point out the fact I had CP I would be embarrassed, would want to run away and hide.

The problem with that though was that I cannot run. Nor should you ever run away from something – stand up to it (or sit up as straight as you can), face it down and learn from the experience.

Maybe I’m a hypocrite though, because once again its one of those things which is so easy to talk about and not too easy to actually do in real life. Yes, I do it. Yes it does take medication (anti-depressants) at the moment to allow me to do it, but that doesn’t really have anything to do with my disability. I used to be able to do it without the anti-depressants and I will be off them and living a medication free life again one day soon. As for now? I just accept it, take one pill twice a day and get on with my life the rest of the time.

I am disabled and it is true that a lot of disabled people do experience depression of such a severity that they would benefit from medical intervention (whether or not they actually admit they need it and therefore receive it or not) it is also more common for women to receive treatment for depression then it is for men to do so. Plus I am also a university student and again that is a risk group for depression. So really it isn’t really surprising that I am depressed, even if my parents and some friends seemed to be surprised by that development.

Many people within the medical profession just assume that simply because cerebral palsy is a lifelong medical condition, those who have it do not have to go through a period of acceptance of the fact that they are “different” and grieve for the abilities they feel they should have as someone with a degenerative condition such as Muscular Dystrophy, or who was disabled by an accident would. That isn’t true, however, as any person with CP could tell you.

I think I must have been twelve or thirteen when I realised that this was it. This was forever. Before that I was convinced that one day I would simply rise up out of my wheelchair and walk away from it. My punishment would be over and I would never again look at the pile of steel and the wheels that formed my cage.

One of my favourite magazines at that age was called “Just Seventeen.” One week there was an article in it about this celebrity called Katie something or other, that I had never heard of and still don’t know what it was she was famous for. It was talking about how she had scoliosis or some other severe medical problem when she was a teenager and could have ended up in a wheelchair. She went on to say in the article that by doing a lot of physiotherapy she had been able to relearn how to walk and stop using whatever walking aid she had previously had to use.

The aim of these “It Happened To Me” type articles always was to help readers to realise that they are not alone, their idols had similar problems when they were younger and got through them. They are a way of telling people not to give up hope – but for me the article about this Katie girl caused me weeks of anguish and I almost gave up hope for the future.

My brother is about three and a half years younger then me but because of my disability there have been a lot of things he did before I did and things that he can do which I may never experience. He has had a job, I have had to focus solely on my studies and so have not. He can drive; I had lessons but had to give it up. He has a girlfriend; my experience with the opposite sex is limited to a few kisses and some harmless flirting.

The day all the stuff with the Just Seventeen article came to a head, my brother was allowed to go to our local shops by himself for the first time ever and I was crying and screaming because I was not allowed to go with him. I really made a huge fuss because I thought that my mum was being grossly unfair but now I know she was doing it for own good. Then my mum saw me reading the article (which I had cut out and read and re-read) and realised that I thought I was going to get better.

That must have broken her heart to have to sit down and explain that no, this was forever. I wasn’t going to ever leave the hated wheelchair behind. Surgery or physio or other treatments may improve my condition slightly, allow me to walk further, but I would never be normal – I would never walk without looking weird, I would never run or jump. I think, aside from when we had a death in the family, this was the most upset I have ever seen her. She held me while I sobbed and I spent most of the rest of the day crying. Life as I knew it changed forever.

Everyone with a disability, particularly a chronic condition, will have had that kind of light bulb moment when they realised what their whole life would be like and had to begin the process of acceptance. And it is a process. I truly believe that when you are a child you don’t realise the looks are pity, the questions are rude, the physio sessions aren’t things everyone does – your mind waits until you are old enough to cope with the knowledge before it gives you that realisation and you have to begin the slow and painful process of acceptance – something that you will perhaps never fully reach and which you may spend your whole life striving for. I’ve managed to accept everything pretty well know (I think) and most of the time I just think “so what?” when it comes to disability issues. But it did take time.

Surprisingly enough, it wasn’t those events that triggered my depression and caused me to need medication.

For a disabled person to be successful and to be the master of their own destiny they must be a fighter; that is a must. Support and services are provided for you but only if you are prepared to admit that you need them and then give your all in the fight to get what you both need and deserve. At times you will feel like giving in, plenty of times I’ve felt like its all to much for me and broken down in tears at the prospect of another battle but I keep going; I have to.

Recently though, the fight got too much and I became severely depressed. It wasn’t just my CP that was the problem. In fact it’s more that I got messed about by loads of people about loads of different things and in my entire life there felt like there was no single thing I had any control over.

I have a fantastic friend, a friend who is able-bodied, surprisingly enough and who was there for me unfailingly throughout this and who helped me to get through this just as she has helped me through anything and everything that life has thrown at me in the two or so years we have known each other. I do however have more than just that one friend and I think that my friends play a very important part in keeping me sane. Whether it’s the friends who are disabled too (be it by CP or some other disability) who just completely and utterly understand what it is like to not be able to do something that you really, really would give anything to be able to. Or the other friends who take me on a night out, buy me drinks all night and then decide they want to go to an inaccessible nightclub and so set out to sweet talk four bouncers into carrying me down a flight of stairs so I can go too because they know I would love it.

My friends probably don’t know just how much they mean to me. I’m as close, or possibly in some cases, closer to them as I am to my family. At times when things have been tough and I’ve been alone I’ve found myself wanting my friends support more than that of my family. Just like The Beatles I really do get by with a little help from my friends.

That doesn’t mean that I don’t really like my own company and that I’m not my own person. I love my friends and my family but I love a good bit of me time too. At the moment I’ve got the hall of residence where I live completely to myself. As much as I love it when its full of people and there’s always someone to talk to, I’m loving it just as much at the moment when it’s completely empty.

I would be the first to admit that there are things that I can’t do for myself because of my CP. However, don’t ever try to tell me that I won’t be able to do something. I am the one with the CP, not you and I know what I can and can’t do better than you do.

When I first left school and went to college to do my A’ Level’s my entire class went on a team building exercise for a day and the lecturer in charge made the mistake of telling me I wouldn’t be able to join in with any of the activities. That was the biggest mistake she ever made when she was teaching me and it wasn’t one she would repeat. There were five activities planned for the day. I took part in four of them and that woman never said I couldn’t do anything ever again.

I have a bit of a thing for collecting song lyrics and quotes that are meaningful to me or that I just enjoy which is why I have included a few in this essay. As I write this I am listening to Christina Aguilera – Fighter because I think it really sums up the attitude that I have towards my disability:

After all you put me through
You'd think I'd despise you
But in the end I want to thank you
Because you made me so much stronger

I know I’m not fully there yet with my journey towards acceptance and I don’t expect to ever actually get over those occasional little niggles about my “problem”. What I do know though, is that I’m a lot better now then I was that terrible day when I was 13 and knew this would be forever.

My name is Emma and I come with wheels. They aren’t going to stop me and neither are you because living with cerebral palsy is not a problem no matter what other people may tell me. It’s my life and I love it.

Are you really sorry?

2005-08-19T08:08:00.000-05:00

I live in a house which is divided into four flats. Up until recently a couple lived in the flat above mine but I’ve only seen him lately, I haven’t seen her. So yesterday I commented to him when he was telling me something “I haven’t seen [his partner] lately, how is she?” and he told me that she has moved out.

Yeah, I really put my foot in it. I made some inane comment in response to that news, he wandered off and I went back inside my flat. But just what do you say to that?

My mum said that I should have said “Oh I’m sorry.”

To me, sorry is something you should say when it’s “sorry” for something you’ve done. If I knock someone with my wheelchair I’ll say sorry, if I’m rude to someone I’ll (probably) say sorry. I say sorry to my colleagues at citizens advice (where I work) for having to pass me things and do extra stuff for me because of my CP so much that I think it drives them crazy. But I think that you shouldn’t say sorry to soemone when what you’re apologising for is something which happened to them but has nothing to do with you is silly and annoying.

I once read a caringbridge page where the mother of a terminally ill baby wrote (I’m paraphrasing here) that her and her husband find knowing what to say when people ask “how are you” hard. She said though that they know that what “how are you” really means is they are saying what is expected of them after they’ve said hello. I think the same is true of the way “sorry” is used.

People will ask me “why are you in that wheelchair” and I’ll explain… they’ll be “sorry” People who treat my CP will ask if I have other medical conditions and I’ll say that I’m on medication for depression. They’ll be “sorry”.

But I don’t think they are really sorry, I think they say it because they don’t understand.

I have CP, I’ve always had CP and I always will. All it is, is a part of me. I’ve never known any different and it’s not something I’m sorry about. And I also have depression which at times sucks so much. The thing is though, depression too has shaped who I am and the experiences I’ve had which make me the girl I am. Yes I could probably have done without it but what I realise now is that if I hadn’t of developed depression a few years ago my life since then wouldn’t have been the same. I love the flat where I’m living, I have good carers and good friends, I’ve really got back into my writing and I adore my job. If I didn’t have depression or CP my life wouldn’t be what it is now. And I wouldn’t give my job up for anything.

So if we talk about my medical problems and you don’t know what to say, don’t be sorry. Admit that you don’t understand and ask sensible questions. Because you’re not really sorry, I know that. Anyway, I don’t need your pity, all I need is your friendship.

Learning. Again.

2005-08-13T13:08:00.000-05:00

There are times, as the mother of a special needs child, that you often walk around in a daze. You watch mothers holding, loving, enjoying their normal lives and their normal children. You watch children getting scolded for mischeif that you only dream your child could get into. You watch other children playing with eachother, and you realize that your child has 1 friend. You.

Its times like that, times of complete despair, that you start to question the meaning of this journey you find yourself on. It is moments like those mentioned above that you realize how much your life is so removed from all normalicy. It is moments like this that make you the person that you have to be for your child. You have no choice, no other option. This is your life.

Alot of times, we as parents focus on the hardships that our childrens disabilities bring to our lives. We focus on the day in, day out hurt and struggle. We forget that we are learning lessons that parents of "normal" children will never learn. That is a gift that we need to grab onto with both hands and treasure deeply.

We know what it is like to stare change (and some of us death) square in the face and take it by the horns. We know what it is like to treasure the doctors appointments that only require vaccines. We know what it is like to sit by our childs beds in the ICU and hold their tiny hands and pray for another day. Beg for it. We know what it is like to hold onto to hope tighter than its ever been held before.

So when you find yourself becoming jealous over what you dont have, look around at what you do have. You have an understanding of love that most parents will never understand. You have a been given the gift of sight. Sight into what life is like on the other side.

And it doesnt have to be full of dispair, its all in how you choose to face it.

The lessons that this journey will teach you are priceless. Face them with strength, determination, and hope.

-Heather

Shay's story

2005-08-03T22:29:00.000-05:00

I'm sure most if not everyone here has read this story but I just LOVE it and recently was just thinking about it. I wish there were more stories like this and that all children could expereince glorious moments like this as well. So, here it is. ENJOY!

At a fundraising dinner for a schoolthat serves learning-disabled children,the father of one of the school's studentsdelivered a speech that would neverbe forgotten by all who attended.After extolling the schooland its dedicated staff,he offered a question."Everything God does is done with perfection.Yet, my son Shaycannot learn thingsas other children do.He cannot understand thingsas other children do.Where is God's planreflected in my son?" The audience was stilled by the query.The father continued."I believe,"the father answered,"that when God brings a childlike Shay into the world,an opportunity to realizethe Divine Planpresents itselfand it comes inthe way people treat that child."Then,he told the following story:Shay and his father had walkedpast a park where some boysShay knew were playing baseball.Shay asked,"Do you think they will let me play?"Shay's father knew that most boyswould not want him on their team.But the father understoodthat if his son were allowed to play it would give hima much-needed sense of belonging.

Shay's father approached one of the boys on the fieldand asked if Shay could play.The boy looked around for guidance from his teammates.Getting none,he took matters into his own handsand said,"We are losing by six runs,and the game is in the eighth inning.I guess he can be on our teamand we'll try toput him up to bat in the ninth inning."In the bottom of the eighth inning,Shay's team scored a few runsbut was still behind by three.At the top of the ninth inning,Shay put on a gloveand played in the outfield.

Although no hits came his way,he was obviously ecstaticjust to be on the field,grinning from ear to earas his father waved to him from the stands.In the bottom of the ninth inning,Shay's team scored again.Now, with two outsand the bases loaded,the potential winning run was on base.Shay was scheduled to bethe next at-bat.Would the team actually let Shay batat this junctureand give away theirchance to win the game?Surprisingly,Shay was given the bat.

Everyone knewthat a hit was all but impossible because Shay didn't even know how to hold the bat properly,much less connect with the ball.However, as Shay stepped up to the plate,the pitcher moved a few steps tolob the ball in softlyso Shay could at least be able to make contact.The first pitch came and Shay swung clumsily and missed.The pitcher again took a few steps forward to toss the ball softly toward Shay.As the pitch came in,Shay swung at the ball and hit a slow ground ball to the pitcher.The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman.Shay would have been out and that would have ended the game.Instead, the pitcher took the ball and threw it on a high arc to right field, far beyond reach of the first baseman.Everyone started yelling, "Shay,run to first,run to first."Never in his life had Shayever made it to first base.He scampered down the baseline,wide-eyed and startled.Everyone yelled, "run to second,run to second!"By the time Shay was rounding first base,the right fielder had the ball.

He could have thrown the ball to the second baseman for a tag.But the right fielder understood what the pitcher'sintentions had been, so he threw the ball highand far over the third baseman's head.Shay ran towards second baseas the runners ahead of him deliriously circledthe bases towards home.As Shay reached second base, the opposing shortstop ran to him,turned him in the direction of third base,and shouted, "run to third!"As Shay rounded third, the boys from both teams were screaming, "Shay! run home!"Shay ran home,stepped on home plateand was cheered as the hero for hitting a"grand slam"and winning the game for his team.

"That day,"said the father softly with tears now rolling down his face,"the boys from both teams helped bring a piece of the Divine Plan into this world."Shay, Was 'King' For a Day!

~Marisa

and wisdom to know the difference.

2005-08-01T13:27:00.000-05:00

It must be said. I must say it. I must say it even though it hurts me tremendously to admit what is really going on here, what really happens.

See, it's Robbie. But it isn't. It isn't Robbie. It's the fact that often when I make plans for us and get us all ready to go and I tell him where we are going and what we will be doing...nothing. Just nothing. He doesn't show me at all that he hears me, that he understands me, that he wants to go or doesn't want to go. Now, I know full well he would have fun, say, at the fair, or the park or wherever. Or he won't and we'll do something else. I know whatever his reaction, we will be fine.

It's just the lack. Lack of reaction, understanding, helping me get him ready...the lack hurts me so much. It hurts so badly. And some days I just don't have the intestinal fortitude to care enough for the both of us.

And it is harder the older he gets. I need feedback. I need a sign. I just can't always do it.

School Supplies

2005-07-26T08:29:00.000-05:00

This seems trivial to write about, but it I am minorly affected by it each year as the beggining of school draws near. The thought of school supplies, school supply shopping, and the fact that it's not something neccessary to do with Noah makes me a little blue.

Noah doesn’t really need school supplies in the traditional sense. He doesn’t need to bring his own pencils or crayons - his school has special ones he uses. He doesn’t need a dozen folders and notebooks or book covers. He doesn’t use a lunch box - packing a sandwich and chips for him just doesn’t would work…..

Our Wal-Mart has this huge display in the store this time of the year that has all the different grades and schools listed and then there perspective list of needed items. Of course, Noah’s school isn’t on the list and doesn’t have a hand out.

I guess I should be grateful for not having an added expense when raising a special needs child usually costs more than a typical child. But, I remember how fun school supply shopping was when I was child. It was something we looked forward to and Mom took us out and we bought everything we needed. How the clean new folers and notebooks were symbols of a new year, a fresh start. I see the other Moms at Wal-Mart with their children and buggies full of notebooks, folders, pencils, etc and I am a little sad that it’s just one of the little things we don’t do like everyone else

Thoughts on Holland

2005-07-08T08:07:00.000-05:00

The post looking at Welcome to Holland and Have a Nice Trip, along with the wonderful insight of Andrea at Beanie Baby, has had me thinking quite a bit since I read it.

An acquaintance of mine [a local sister in the same 'sorority' chapter as I] wrote this essay/letter that I keep filed right next to Welcome to Holland. I keep a file of sorts,,,,
read more

a collection of postcards. Some are simple little quotes. Some are a paragraph or two. Some are just postcard photograph with a simple hello and a stamp from the time and location. Some are longer essays filled with many facets and some are books, such as Pearl S. Bucks, The Child who Never Grew. The words are different, the perspectives and experiences are unique,,,,,but the common thread is the same. We are sisters in a sorority of Motherhood, traveling to places that others may never get to experience or even understand. We are all richer and wiser from our travels, although our bodies, minds and souls sometimes have gotten worn, battered and bruised from the trip. Our luggage doesn’t always arrive or our connection never comes, So we need to adapt the best we can. But we are travelers, the world over, and our journeys are the journeys that make a life full of wonder and full of new horizons.

So I share with you this piece, and I hope it finds its way into your 'collection'

To You, My Sisters
© Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children ungergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars

graduate work

2005-07-07T22:03:00.000-05:00

submitted by Angie

Today is the day that I figure I have officially earned the title "Master Mama...in the area of puke clean up".
continue if you dare...
Yes, Emma did her usual routine during lunch...finished it once, threw it up, ate again, got in the car, and threw up all over her car seat. That's great! I'm good at this...not the first time. DEEP breath, thank my lucky stars that my child is with me today, and I am able to do things for her (I know what my fate could have been, and I feel so fortunate to have her here with me today).

Well, after dinner Wal-Mart was calling our name. We had pictures that needed to be picked up...that is ALL that we needed. So, I decided that we didn't need the diaper bag...we would only be gone a few minutes (I JUST told Tim, my husband, to never go anywhere without the diaper bag because that is when you would need it the most). We picked up the pictures and I remembered that I needed to get milk. We turned the corner by the infant dept. on the way to get the milk. Emma starts to cough...OH NO, she is going to throw up (remember...no diaper bag). I grabbed her dress, and caught ALL of it. Then, I went into the infant dept. picked up the first outfit that I saw, managed to get to the bathroom without anyone seeing us, changed Emma, put her back in the cart, and we were on our way (yes, we did pay for the outfit:). I have to say that I am inmpressed with myself (pat on the back).

Now, is this a "typical" response that a mother would have for their child coughing?...NO! My life is not "typical", but I am learning to appreciate every aspect of my child. She is ours, we chose to give her life, we chose to give her a second chance at life, we are SO thankful to the family that made the decision to donate their daughter's organs so Emma could have that chance, and we will do everything in our power to give our baby girl the best of everything in this world. I get stressed and upset when she gets sick, but as my husband says..."we just have to remember that we are on borrowed time". So, tomorrow I will wake up, take a deep breath, and go pick up my beautiful Angel here on Earth, and I will love her with all that I have!

Something Else Please

2005-07-05T03:17:00.000-05:00

I have spent hours pondering over my first post here. Each time I delete what I have written and gone onto something else. I am not sure how to begin or what to say. I feel like I am just repeating myself and then on the other hand, I don't want to talk about my son and what is going on in our lives. It is old and just the same old thing. I want to talk about something else. I want do something else. I want to be somewhere else other than the hospital for another Drs appt.
Continue reading...

I started a CaringBridge site to handle those things from our friends and those from our church. I grew weary after being asked for the millioneth time how Sean was. No one asked me about anything else other than Sean. While I love my son and he is a huge part of my life, I am kinda tired of Sean talk and would love to talk about something else.

Two of my dear friends knew how I was feeling and started to protected me from prying questions. They knew how much I needed 'something else' and not to talk about Sean. I thank them for doing such a sweet thing for me. Their simple act helped me feel like it was okay to not talk about Sean and to think about what I wanted and not what Sean needed even if it was for a few moments.

I sent out an email and let everyone know they could refer to this site for their updates. I told them I was tired of the questions over and over a million times each day. It was draining and time consuming as well as bothersome to my other boys. They always didn't know what was going on and my teenage son felt put out by the questions. Always about Sena. Never about how he was doing or the other boys. It was nice to go to church and not be hounded about things or to have a million calls about Sean's latest surgery. It gave us time to focus on our other boys while Sean was in the hospital.

This site also stopped the rumors. It was straight from us and not second/third hand. I wished I had had it when Sean was younger. It would have prevented some heartache and stress.

My name is Shelly and Sean is one of my 4 sons. He is 6 and has VACTERL Syndrome. You can go to his caring bridge site to learn more about his conditions. I also have a blog with somethings on there to help those in need of more information and my place to vent. We are on a journey through life and learning things we dreamed ever existed in our world.

Is it really Holland?

2005-07-04T22:43:00.000-05:00

Here's a well-written piece from Brain, Child magazine that came to my attention via Andrea of Beanie Baby, who also has her own insightful take on the piece.

I admit that I have had my own reservations about the Holland essay. What about you all? Any thoughts? Did Emily Perl Kingsley spend too long writing for Sesame Street? Are her glasses a little too rose-colored? Do you think the Welcome to Holland piece is useful for its stated purpose (i.e. explaining to others what it's like to parent a child with a disability)? Is it a useful piece at all?

Not Otherwise Specified

2005-06-29T21:33:00.000-05:00

Hi, all! This is my first post. I have been meaning to post for such a long, long time, but things have been going very well with my son, and I really haven't felt like even thinking back on how unbelievably hard our lives have been. Up until now. And lately. Like, the past year. The past year has been amazing and so very easy.

See, my son, R, is four-and-a-half and he is autistic. He has PDD-NOS to be exact. That stands for Pervasive Developmental Disorder, Not Otherwise Specified, and is included in DSM-IV for cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. He is just now starting to speak, and he is pretty behind socially, as well. R is very, very affectionate, sweet, and even-tempered. I cannot believe how sweet and even-tempered he is considering that he hasn't been able to communicate with us verbally, and there really is only so much a person can pantomime. If it were me, I would be surly.

Okay, so, I was reading something online, in a debate forum on a mommy board, and out of nowhere someone stepped up and mentioned meeting a woman with an autistic child. This someone, I'll call her B, seemed to feel superior to this woman because the woman hadn't heard about the gluten-free diet yet. Her autistic son just turned three and was recently diagnosed. B stated that she couldn't believe how like a deer in headlights the woman was, and that the woman didn't even know to change her son's diet--B's words: "...that she would rather keep her son imprisoned in his own mind and unable to communicate than to feed him differently."

I became irrationally angry at this point and went a little berserk. And after I typed through my irrationality, I thought it might make a decent post:

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I would like to say that not every person with autism is the same. Not all are imprisoned in their own minds, by any stretch, and it is insulting to the n-th degree to say as much.

That poor deer in the headlights woman *is* a deer in the headlights. Knowing when your child is three is an amazing bit of parenting in and of itself. If she hasn't yet heard of the gluten-free diet, she will.. And secondly, it is unbelievably offensive to think you know more about autism than that woman, or anyone for that matter. Just because you know about the highly publicized, largely ineffective diet certainly doesn't mean you know autism.

Could you help her child when he is melting down? Do you know his stims? Can you figure out what he wants to eat, as he is incapable of telling you? Do you know which door to use to enter the store so that he doesn't see a fountain or an escalator or those spinny garden decorations, any of which will throw him headlong into a stim that will inevitably end in a meltdown?

Do you know if he hates itchy tags or loud noises or crowded or cramped spaces? Your laundry detergent, your vacuum cleaner, your blender....does he need to watch water coming out of a faucet for hours? Will he want you to rewind the same 4 seconds of television for fifty minutes? Does he hate hats, sandals, jello, mud, dogs, cats, birds, garages, forks, spoons, and only drink out of the blue and green cup with the handles?

Stuff like this has made up 1/1,000,000 of my day, every day, for years.

So forgive her if she hasn't heard about the "special" diet that will free her son from the prison of his own mind.

SHE'S BEEN BUSY.

The Language of Love

2005-06-28T22:28:00.000-05:00

Here's another submission from
Suzanne, www.specialneedsmom.com

Watching her face, I anticipate the beginning vocal sound of the word I want to hear. Sometimes her mouth remains still, untrying. Searching her eyes, I wait patiently for understanding.
No matter what my child's language limitation may be, I respect her receptive ability. She may not understand the meaning of all of my words, but she can use her senses . To hear- the soothing tone of my voice, to see-my gentle smile of encouragement as I speak and to feel- the warmth of my touch.

These things are a language she knows. In her mind, she may not only understand, but speak a language of her very own- understanding the language of love.

Suzanne, www.specialneedsmom.com

Stares, Whispers, Nudges and Judgement

2005-06-20T14:48:00.000-05:00

I learned something new this past week.
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On Satuday, June 12th, Anthony awoke from his nap and the right side of his head, surrounding his ear, was so swollen that his ear stuck out at an odd angle. Off to the ER we go, only to learn that this is NOT a brain tumor (hey, I read too many Caringbridge pages, what can I say?!), but rather an abcess on the mastoid bone compounded with a major ear infection and a possible dead mastoid bone. No one in our home town is qualified to do this surgery (huh?) so we were transported to Children's Hospital in New Orleans.

After a midnight surgery to drain and remove the abcess, Anthony was left with about 12" of packing in the wound. This was to serve two purposes. One was to allow the hole in his head to heal from the inside out as they gradually pulled the packing throughout the week; the other was to allow the packing, which was coated with a bacterial killing agent, to help fight the rest of the infection. With an open wound behind his ear, the ENT covered Anthony's ear with a plastic cup which was held on with a strap around his head.

So, on to what I learned this past week: Rude people abound, even in a hospital setting. I know that I will never have the complete understanding of this that a parent with a child who has a visible handicap does, but the stares, whispers, nudges and judgement I saw/received this week were unbelievable. I was asked if someone (wink, wink, nudge, nudge) had beaten Anthony. I was asked if he was retarded (this, not from a child, but from the mother of a child who was also in the hospital). Some people asked "WHAT happened to HIM?". Others just stared and shook their heads as if they couldn't believe I would take my child out like that. And a few days after Anthony's surgery when his eye swelled up...well, the questions and stares were worse. Remember...we were at a hospital; we never left the grounds of Children's.

I'm so used to Anthony's liver transplant being *there*. I'm so used to answering the questions about my license plate (DON8LFE), three bumper stickers and ribbon magnet. I love to tell people about organ donation and how it has changed my life. I thought this would be a similar experience. A teaching experience.

I was so not prepared for the reactions from the people at Children's. Oh, the nurses and doctors were wonderful (as they always are). I truly was not prepared to answer questions about whether someone was beating my child! I certainly was not prepared for people who will outright ask, "Is your son retarded?" I would DIE before I said that to someone, and I was astounded that anyone would ask me about that.

So I learned this week that ignorance abounds. But I also learned that I will certainly need to make sure that Anthony does not turn out to be one of those children who stares at a handicapped person. That he should feel free to ask me questions, but that it's absolutely not okay to make that person feel ostracized.

One good thing about our hospital stay this week was Camp Med. Local children attend a camp at the hospital for a week at a time throughout the summer. These children wheel themselves around the hospital in wheelchairs. Counselors follow them reminding them that they cannot use their legs to push open a door. Some of the children had their arms strapped as if they had an IV in. Some had to wear the dressings that a burn victim does. Others used crutches or canes to maneuver themselves through crowded hallways. I know this doesn't even come close to understanding life with a handicap. I do hope, though, that it helps them learn compassion towards those who do live life with a handicap, or in the hospital.

I had to live with the stares, whispers, nudges and judgement for a week, and I failed miserably with a lesson in tolerance. I was rude and abrupt with anyone who asked what I deemed a stupid question. It's obviously a stronger parent than I who can live with those stares, whispers, nudges and judgement forever.

Memories of Sarah

2005-06-18T11:58:00.000-05:00

I was going through some old boxes of "stuff" the other day and under a pile of papers I found some photos and a video tape. I looked at the writing on the tape and discoverd that it was the one and only video tape I had ever made of my daughter Sarah. How it got to the bottem of the box of "stuff" I will never know but there it was right in front of me. How could I resist not running to the VCR and poping in that tape. As we sat there watching it I discoverd it was taken the day before she had her cardiac arrest and was life flighted to Childrens Hospital in Pittsburgh. Her face wasn't as happy as I knew her to be but there she was for all of us to see once again. Oh how those memories came flooding back to me. Little Sarah has been gone for 2 and a half years now but it seems like yesterday I was running back and forth between home and hospital.
My mom sat there giving my new daughter Katie a bottle and at 2 and a half months old I don't think she much cares what goes on except keeping her belly full and dry diapers, but when that tape went into the vcr she stopped what she was doing and she sat and stared at the tv watching her sister. It was almost like a message from Sarah. Somehow Katie knew she should look and watch her sister and as she sat there smiling away at the tv and the baby she saw I wonder if she knew it was her guardian angel watching over her. Some people don't belive in Angels or signs but I can tell you I do. Sarah watches out for all of us everyday.

Dear Little One,

2005-06-17T22:02:00.000-05:00

Things are not always as they seem.
We were at the park the other day, you and I, and your big sister too. She is four, only a year older than you, but she can run and jump and climb.
And you, completely in love with her, always laugh and clap- and share her joy. Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently.

On this day we can see the playground ahead, and your sister begins to run. My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait. You are impatient; there are probably hundreds of tiny footsteps between you and your sister. You reach your arms up asking for help. You want me to carry you. I refuse the voice in my heart and I say “no”. I take your hands in mine and we begin the slow walk together.
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Finally when we arrive at the playground, you want to climb. I hold your waist, your arms and sometimes just your hand to stabilize you as you move
carefully up the steps. A little boy, almost half your size walks by you, too close -his body briefly making contact. It is enough to challenge your balance and you begin to fall. My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide. I place you in my lap. You begin to scream loudly and I see the boy’s mother studying you and me. Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment. We push off the top of the slide and you are crying in fear as you always do. And five feet later as we reach the bottom I hold you in front of me and you laugh! We are closer to the boy’s mother now, and we make eye contact.

Before I can even consider conversation she asks “How old is she?” Almost three”, I reply... “And your boy?” She answers that he has just turned one, a few months back. She abandons the conversation, afraid and unable to ask the obvious questions. She turns her head and her eyes follow her son instead.

You see, little one….things are not always as they seem. When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me. You may even be restless or fussy. Others may see your physical size, your neediness and think I am indulging you. But things are not always as they seem, I know your needs.
Sometimes, you may cry or scream in public it is because I am challenging you. Expecting you to act like other children as we move through public life socially as a family. Others may see a tantrum; I know your special needs.

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior.
But I know you are adapting to the challenges of your environment the best that you can. I know your special needs.

Love, Mommy

Submitted by Suzanne Perryman, www.specialneedsmom.com

Differences in Common

2005-06-10T19:25:00.000-05:00

Raising a special needs child is a blessing of mixed emotions. She has taught me that the capacity of patience is almost inexhaustable. After 10 years as Lil Sepia's mom, I now know that my road will be filled with joy, pain, laughter, repressed anger at and endless prayers to the GOD that gifted me with her.

A couple of months ago, I watched "Riding the Bus with My Sister", a Hallmark tv movie and feel good tear jerker that will send the "normal" world their seasonal dose of "Thank God, that isn't me" or "Poor poor woman, I feel her pain". Spare me. My reality doesn't end with credits and a good cry.
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Andie Mc Dowell played a harried career photographer that is forced to reconcile with her developmentally delayed sister, played by Rosie O'Donell, after the death of their father. After watching this, I have a renewed respect for Rosie, she played this role without creating a characture or dramatic theatrical overkill. Andie's performance reminds me of my own struggle to deal with the cruel side of society. The side that still throws the word "RETARDED" around as a joke.

When I chose to have my daughter at 31, I would have never believed at the time I would wind up with a child whose existence would so challenged. People can be so cruel, even family will distance themselves out of ignorance or from being uncomfortable around someone "different". Coming to grips with the isolation and stunted sociability has caused me to seek other forms of reaching out to those that I can commiserate with, as well as "typical" parents dealing with the same daily childhood issues.

The reality checks for me come on a daily, if not on an hourly basis. I have chosen not to write much about her. not out of embarassment, but out of frustration. I spend alot of time defending her diagnoses. Mental retardation and Cerebral Palsy are quite a 1-2 punch and my patience with the uneducated and ignorant comments, stares and atittudes wears thinner on some days more than others. When I see children stare, sometimes I take the opportunity to introduce Lil Sepia and give them age appropriate info on her "differences" as well as what they may have in common. The parents I hope will teach their child about disability and sensitivity.

Speaking of that, one of the best books I have read on this topic is "Differences in Common", by Marilyn Trainer. She captures the struggle, with an unflinching look, at the truths of parenting her son with Down's syndrome.

I have read countless books on cerebral palsy, mental retardation, parenting and therapies. Occupational, physical, music, and speech therapies are just a few that have helped my daughter be more independant. It is a difficult balance between sheltering her and pushing her to excel. I fight with family, friends, doctors, teachers and well meaning strangers who want to add their 3 cents to my supposed "plight".

As her mom, I can only hope that I will be able to give her the best of what she NEEDS, most of what she WANTS and pray that society will acknowledge we all have "differences in common".

Who knows, maybe GOD's sense of humor is that WE are the ones who are really "special" and THEY are angels living on earth laughing at US.

I just wonder. ;-)

What I Wish...

2005-06-07T22:51:00.000-05:00

Moreena asked me ages ago what I wish that my parents had known about having a child with a disbility when I was growing up. It's taken some time to come up with as it needed some thought and I would be interested to hear comments. [as an aside, I mentioned the question to my mum and she requested we "not go there" so I don't have her take on it]

I’ve had cerebral palsy (CP) for all of my life and have always been a wheelchair user to a certain extent. My journey with cp has been a difficult one and I don’t think I’ve fully reached my destination of “acceptance, Holland” yet… I’m a lot closer than I was even one year ago and I do spend a lot of time there but I do still occasionally spend sometime in “Longing, outside looking in, outskirts of Italy, border of Holland”… Longing is a place where you expect to find those who have just been diagnosed or had their child diagnosed with a disability or serious health problem.

Sometimes though, those of us years past diagnosis and even people like me who have never known anything other than life in Holland can be found there, sitting in our wheelchairs looking over at the so called “normal” people, the Italians and feeling wistful, wishing we could be like them. Longing isn’t a very nice place though… it doesn’t have the Rembrandts, the windmills and the tulips of Holland and it doesn’t have the children running and jumping and living their lives free of medical hardship which Italy does. It’s just a dark place, an empty cold place which you must move on from in order to flourish and survive. You can always return for a brief visit when things get tough if you must but it’s not the place to set up camp and live forever.

However I don’t expect to ever fully arrive there over in Acceptance, Holland to stay… just like happiness, it’s more of a journey than a destination I think.

I don’t have a problem with my disability, many years have passed since I was the shy girl who hated her “problem” and the wheelchair which represented her “cage”. I do still have moments of I hate this… but now they are usually very short and quickly become replaced by “it’s not the cp that I hate it’s the problems that living in this world causes.”

There’s a lot I could wish I had known a lot younger in life… there are things I *do* wish I had known when I was younger which would have made things a lot easier for me and taken a way a lot of my tears and traumas. I was asked what I wished my parents had known when I was younger… That was a question which took quite a bit of thought.

After some thought this is what I have decided. For me, I think I wish they could have known that what they were doing was right... that forcing me to be independent and do things for myself even when it was a struggle and I screamed and cried and said I hated them was a very good thing because it made me who I am today. If I could go back as I am now and say one thing to my parents when I was younger it would be "thank you"

I think they probably knew that it was the right thing to do otherwise they wouldn't have done it but not only did they have to deal with my reactions they had to deal with others too.

And as I’ve learnt throughout my life dealing with well meaning, pitying or even disapproving strangers can make the journey with cp so much harder.

When I was younger I used to be able to walk a lot more (it’s not uncommon for people with cp to lose function when they have the growth spurt in their teenage years) and used to walk more than not. I was walking around tescos with my mum and fell. Because of the way I walk it is extremely obvious that I am disabled – my upper body “swings” from side to side with each step.

So anyway I’d been walking in the supermarket and fallen. I had recently learnt how to get myself up when I fell and it was a skill I was very proud of. So proud that when my then physiotherapist came to see my at nursery right after I learnt it I went “look what I can do” and threw myself on the floor so she could see me get myself up off of the floor. I digress…

But then, as now, when I fell in a “new” place I was a bit unsure of what to do. We had also learnt as I think most parents do that its better not to make a fuss if I fell because it would make things worse. So she just went “go on then, get yourself up” and up I got.

Standing near to us was a woman from the salvation army. She obviously felt very sorry for me and began to pray for the “poor handicapped girl”. Whilst I have no problems with the concept of prayer and religion I have a huge issue with this. Praying for someone you do not know in the middle of the supermarket just because you feel sorry for them and feel that they need better/different treatment or surroundings is plain and simple wrong. There is such a thing as silent prayer but what she did is pray out loud for me which meant that everyone heard.

My mum has since said that it made her feel as though this woman thought that she was a terrible mother just for doing something that she [my mum] knew was best for me. To give an idea of how much this must have affected my parents – I probably was only five or so when this happened and have no clear recollection of this happening. But this is an incident which has been repeatedly mentioned at various times ever since that I now remember it

I think now so many years have passed since this incident that it no longer bothers any of us but at the time it obviously did and if the girl I am now possessed a time-turner like they have in Harry Potter and could go back in time to see my mum and me as I was then I would have to say “keep going, it must be tough but look at who that little girl clinging to you hand becomes – I am who she becomes and if it wasn’t for all the struggles, all the tough times, all the times you did something and then wished you didn’t have to – I wouldn’t be who I am now.

That’s not to say that I think my parents did everything right. I can think of at least one incident where I think they maybe did wrong. This was when my brother who is just under four years younger than me was allowed to do something for the first time – something I had not been allowed to do. I was about 13, maybe 14

But I don’t see how they could have done it any differently and to be honest I think now looking back on it with the perspective that the luxury of being a decade past the event brings, I needed that to happen.

I kicked to the best of my ability, I screamed and I well and truly made it known that I thought this was the most unfair thing ever. But still my brother was to go and I wasn’t.

Some comment I made showed my parents that I was under the mistaken impression that if I did enough physio I would be cured and would no longer be disabled. We talked and my mum and I cried together whilst she explained that she would do anything to take my cp away from me but it was never going to happen.

And yes, I do think that perhaps allowing my brother to go and making me to stay when I knew I was the oldest and was very proud of that fact was a little harsh. But that was a situation which was always going to be tricky. Either me or my brother were always going to be upset by the decision.

As I didn’t get to go I hurt badly on that day. But I also learned a very important life lesson and started moving away from my spot in Longing, and making those difficult first few steps along the rocky and somewhat winding road towards Acceptance, Holland – the one I still travel now.

So if I could tell the parents of the newly diagnosed and growing up Emma one thing. It would be do what you think is right, follow your hearts and do your best.

Even if your child treats you like it’s the worst thing you could do for them, if family disagree and strangers disapprove… they are your child and you have to do what is right for you and for them. And when they’re grown up and can look back on events with 10, 15 or even 18 years since they happened. They will probably thank you. Because good times, bad times, painful times, happy times, without them and more importantly without their parents love and support they wouldn’t be who they are. The disability or illness which they have isn’t what defines them and makes the person “Emma” it’s the experiences, and most importantly the nurturing they have received.

Angels

2005-05-27T17:32:00.000-05:00

I came across this poem one day and it seemed like it was appropriate for every parent who has lost a child under any circumstance. I am not sure who wrote it but I would like to share.

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Some angels come to visit us,
and be our guests one day.
We know not why they choose our home,
or just how long they stay.
We developed such a love for them,
we didn't stop to think.
That when they had to leave us,
how our hopes and hearts would sink.
They brought much joy and happiness,
but a little sorrow too,
sometimes we were worried,
we knew not what to do.
In this glorious life of sunshine, we must also have some rain,
and amid our joy and happiness,
we must also get some pain,
we are in a state of sadness now,
and repeat a silent prayer,
for those heavenly angels
God placed within our care,

a place I Want to be

2005-05-15T19:27:00.000-05:00

As you drive down the turning paved road you can see the enormous lodge looming ahead. Down in a small canyon lived a special camp for some VERY special campers. I attended the Moncrief Mountain Ranch camp for 6 years. It really helped me cope with post transplant life those first 6 years. It was a place I yearned to go back too year after year. When given writing assignments in school I would often write about my expereinces there. Below is one of those writings.
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It's peaceful here. During the day I could hear the running of the rivers, horses, wolves, and birds chirping. While I walk along the narrow turning path I can hear the padding of other's feet, sticks breaking with a crunch, and an occasional giggle. Here I feel light and dreamy like nothing can get me down. I can smell the pine all around me and feel the warm sun beating down my back.The evening is just as peaceful. I can feel the warmth of the crackling fire and feel a sudden blow of cool air on my back as I snuggle even closer to the fire . I can hear the calling of an owl as I sit in front of the fire on a tree stump. The moquitos nip as I sit with friends talking and singing. The night sky is clear and I can gaze at the moon and stars.A place to think of and yearn for while back at home in a hospital bed.

This camp is now closed. It closed after the summer of 1995. Rumor was someone sued the camp. Becuase of the mistake of one child this place of memories and yearning is now gone.:(
My friends and I miss it dearly and nothing will ever replace it.

Happy Mother's Day

2005-05-11T21:47:00.000-05:00

Happy Mother's Day

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.
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Every mother wants so much more.
She wants a perfectly healthy baby with a round head,
rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park
and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse,
a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming,
and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later,
took him in for a routine visit, or scheduled him for a checkup,
and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen,
quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications,
and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes,
the well-intentioned souls explaining how God is at work
when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you,
painting you as hero and saint,
when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

The Frog Story

2005-05-10T20:51:00.000-05:00

This is a little known story about faith. It was spurred on by a single email; from a friend I don’t even know that well. It’s amazing how one seemingly insignificant event can change a life forever. This story is about a frog, but by the time you are finished reading you will understand why…it’s not about the frog.

In June of 2002, my daughter Drew had a life threatening "911" bleed caused by complications from her liver disease. That day holds the single most horrific moment of my life. The vision was something out of a horror movie. But this was not a movie. It was MY husband covered from head to toe in MY daughter’s blood because he was holding her when she started to vomit. The bathroom walls were splattered with blood. But the scariest thing of all is that we almost lost her that day. After we were released from the hospital I was in the grip of worry that was all consuming. They told us that until Drew got her liver transplant it could happen again. I wondered where we would be when the next volcano of blood would erupt. Would we be in the market? At a birthday party? I wanted to shield others from the horror that I knew could happen. It was too much to bear. I needed to overcome this worry. It was suffocating me.
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July 9th I received an email... the subject line read F.R.O.G.

Here is the email exactly as it was sent.

__________________________________________________________________________

F.R.O.G.

I was told a story about a lady in the hospital who was near death when an area Chaplain came to visit her. This Chaplain was a very young female with long blond hair. She listened to the lady who was ill and left her a small gift for comfort. It was a tiny ceramic frog.

The next day one of the people from the lady's church came to visit. The lady told her friend about the beautiful young Chaplain who had come to visit her.

The friend was so impressed with the way the lady had improved and felt the need to talk to the young Chaplain. In her search to find the young gal, she was repeatedly reassured that the chaplains are never very young and that there was never a gal that fit the description given.

Upon returning to the lady in the hospital, a visiting nurse entered the room and noticed the ceramic frog. The nurse made the comment "I see you have a guardian angel with you." As she held the little frog.

We asked why she made the comment and we were informed that the frog stood for:

(F) Fully (R ) Rely (O) On (G) God

_______________________________________________________________________

I read the email that day in July with no expectations or understanding of its meaning. At the end of the email it said “Send this to eight people and something amazing will happen in four days” or something like that... I hardly ever forward stuff that says pass this on, blah blah blah. So I deleted the email and carried on with my day.

That night I was giving Drew a bath; my moments of deepest thought somehow find me there. Her precious belly in its naked splendor only caused me to worry. The Kasai scar reminded me of her battle, the road map of veins led my mind to worry. Does it look bigger today? I picked up a bath toy to distract my self. It was a scrubby-spongy thing. I recalled the day when my stepdaughter Mallory got it. We were in the checkout line at Stater Brothers when she remembered that she wanted a body scrubber... She ran back moments later laughing... "This is the only one I could find..." We both laughed, it had a silly frog on top.

Remembering this story while holding the frog was like a chain reaction of memories speeding through my head. I recalled that during all of Drew's trips to the lab for blood draws we would always bring the same stuffed animal for comfort. He is a silly, smiley, green frog!!! Then it all hit home and my throat became choked with emotion when I realized what had happened just four days before. We had taken Drew to UCLA for the first time to be evaluated for a liver transplant. Drew was scheduled to have an ultrasound. UCLA is a teaching hospital and there are usually other students and doctors who observe procedures. During the beginning of the procedure a woman in a white coat came in just for a short time. Even though we had a backpack full of toys, a DVD player playing a movie for Drew and a huge bag of M&M's the woman in the white coat asked us if Drew would like a toy. We sort of hesitated but said, "Okay…sure." She handed Drew a small plastic toy and then left. It was a small green frog.

_______________________

People wait their whole lives to receive some sort of sign from God to let them know that He is there. At that moment I felt like the Grinch who stole Christmas, during the part where his heart grew three times its size. But it wasn’t my heart that grew…it was my faith.

God has been so kind and gentle to us during all of these difficult times and now in his amazing, omnipotent way he showed me exactly what to do with my worry. Fully Rely on God. I am positive that none of this was a coincidence...

Without my friend sending me the email on that day, I would have missed the most amazing thing about God. But He knew I needed it that day, at that very moment and as always He pointed out how many times He has been there for us even on the days I wasn’t thinking about Him. He was with us. He helped me to realize that he is in control of our situation and that I can trust in him. Fully rely on him.

This is only the beginning chapter of this story, the rest is still being written. Frogs continue to be a sign of His love for my family and me. They come at times when I need them the most. Sometimes they are given to me by people who know the FROG story. Then there are the ones God sends. There have been many, many more and each is another chapter of His love for us. There are times when I feel like people wouldn’t believe how many frogs have popped up since our story began. But it’s absolutely the truth.

So now you know my story. You may never look at a frog the same way again and most importantly you know that my frog story is not about the frog.

Hi, everybody

2005-05-07T07:52:00.000-05:00

I'd like to thank Moreena for the invitation to join this blog and Ciara for linking me here. Anyway, I'm a 42-year-old father of two autistic/mentally retarded boys, ages 8 and 6. Both boys are energetic and frequently happy; both can be extremely violent and destructive as well. The 8-year-old is capable of speech; the 6-year-old isn't. Our family resides in the Northsore area of New Orleans, Louisiana. The boys currently reside at the St. Mary's Residential Training School in Alexandria, Louisiana, where they are given love, dignity, and round-the-clock professional care and training. Our local school system was very accommodating, but the home situation was so crazy that we decided to make use of St. Mary's, which is very much like a country boarding school run by nuns. It was devasating to place them outside the home, but I'm pleasantly surprised at how well the boys have adapted and even improved. Anyway, I look forward to conversing here.

My Best Teacher

2005-05-04T23:53:00.000-05:00

Like most women, I like babies, but I always enjoyed interacting with already verbal kids more. Consequently I couldn´t wait till my kid started talking. It turned out to be, for me, a long, frustrating wait.
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A week after the diagnosis, I finally managed to dry my tears long enough to bid on a few hand-puppets.

He could talk a little by then, but he had developed his own language only we could understand and even then it often sounded bizarre to us. He was also largely echolalic, had his pronouns all confused... pretty much the classical speech pattern of a verbal autistic.

He managed to make his needs known, but I wanted to know him.

I introduced the boy puppet first, while my son was lining up his Bob the Builder toys.

Puppet: "Hi, my name is Thomas. What´s your name?"

Son: No answer. He´s never answered this question before. I wasn´t even sure if he understood.

Puppet: "Do you have a name?"

Son: "No."

Puppet: "Ok, how would you like to be called. Max, Alexander..."

Son: "Alexander." (Not his name, but a favorite from a cartoon.)

We pretended he was called Alexander for a while, and he showed me all of his Bob Toys and told me their names and colors. I could tell he was starting to enjoy this. At some point I introduced a second puppet, a girl.

Boy Puppet: "Hi Anna. So glad you could come! Look, I have a new friend."

Girl Puppet: "Oh, he looks nice. Hi there, what´s your name?" I held my breath.

Son, in a sweet, shy voice: "My name is Sam.*"

I thought I died and went to heaven. He had never answered this question before, ever, despite much coaxing and bribing. He wouldn´t talk to humans, but for some reason he would talk with the puppets, and my beginner´s luck gave me hope to move forward.

________________________

"Look C., look at the tulips!"

I´m driving son to the speech therapist. As usual, the traffic is atrocious, and I´m keenly aware of the fact that we´re running 10 min. late. I feel stressed. Given that he points out every tulip he sees to me, I was tempted to overhear him. But then it hit me.

"Look C., look at the tulips!"

My son cannot talk about the abstract. But there´s one thing he see and, therefore, can grasp and that´s nature. It´s all he can think about, therefore it´s all he can talk about. So he talks constanly, about the clouds, and the rain, and the snow, the flowers and the rivers...

Thanks to him, I know now every single place in the vicinty that has tulips and could probably tell you the colors of most of them. And he´s got me so well-trained, that when I spot some he hasn´t seen yet, I rush to point them out him, so that I can hear the delight in his voice.

But the most important thing he taught me, was to be more aware of the nature around me. To take time and smell the roses. It´s something we tend to forget when we get older and I´m grateful he´s here to remind me.

"Who do they belong to?" he asked.

I was tempted to say "City Hall" but I answered.

"To all of us, son. To all of us."

When Life Gets Good...

2005-04-28T09:45:00.000-05:00

You know, some days I forget that I'm the mom to an immunesuppressed kiddo. Life is good in our house. The only reminder of the transplant that is ALWAYS there for me is the ONE medicine Anthony takes. That's right. Fourteen months post transplant, Anthony is only on his Prograf.
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The other reminder is his cute scar. I love that scar. I kiss it every night. If it were not for that scar, my son wouldn't be here. That scar means he had a transplant, and that the transplant saved his life. What could be a better reminder than that scar? I know that there are parents who rub their child's scar vigorously with Mederma. I stopped doing that in June of last year. Why? Because I want that scar there. I want to see that scar every day. It's not a bad looking deal, either. It's just there, and it's a light peachy color. Ask Anthony where his belly button is, and he'll show you (albeit reluctantly). Ask him where his scar is, and he'll pull that shirt up so high, you think he might choke on it. He loves showing that off, and I want it to stay that way.

Anyway, back to my original reason behind this post. Life is good. Anthony is healthy. Why am I sad? Believe me, 98 days in Omaha, and then a two day (at least) stay at the local Children's hospital here in Louisiana from August through December 2004 was enough for me. I'm not sad that Anthony is healthy and doesn't need that seemingly endless run of sedation, biopsies, NG tubes and eating therapy.

I do want, though, that special bonding we had. That when he didn't feel well, he'd crawl into Mommy's lap and snuggle. That he couldn't go to sleep at night unless Mommy was there holding him (or crawling into that damned hospital bed with him). I wish he could be healthy and still want Mommy all the time. At 17 months, Anthony has learned that he can be independent. He doesn't need Mommy (or Daddy) to read a book to him...he can look at the pictures alone. He doesn't need Mommy to feed him...he's really great with the hand to mouth coordination. He doesn't need to be rocked to sleep...I just put him in bed at 8:00 every night and he's asleep within minutes. Heck, he's even showing interest in potty training!

And then, there it is...always in the back of my mind...how long can this last? Will he go into rejection again? Will he eventually need another transplant?

I have a hard time sometimes, trying to separate my "Anthony thoughts" from my "normal thoughts". And I find myself not being able to concentrate on my "normal thoughts". Anthony's better...when will his mommy be?

Happiness is a Journey

2005-04-25T21:02:00.000-05:00

Happiness is a journey, not a destination

For a long time it seemed to me that life was about to begin-real life but there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. at last it dawned on me that these obstacles were my life this perspective has helped me to see there is no way to happiness. happiness is the way. so treasuer every moment you have and remember that time waits for no one.

I wish I could say I wrote that but I didn't. Maybe some of you have even read it before. When I read it on the magnet I bought this weekend it just really hit home for me. I was holding back in my life and trying to find happiness. Well, now I know HAPPINESS IS A JOURNEY and I am LOVING my journey through LIFE!

~Marisa
liver transplant recipient

On Hunkering

2005-04-24T01:30:00.000-05:00

I spent today in a training program for parents of kids with Down syndrome who volunteer to give support to new parents of babies with Down syndrome. It was a good training session and is a program that I'm very excited about.

But it was also a long day of hearing about kids with Down syndrome and looking at their pictures. It was a long day of listening to - and sharing! - the difficulties that their parents face. It was a long day and I'm exhausted.
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Before Ellie was even born, people encouraged me to go to a local Down syndrome playgroup. When Ellie was about 5 months old, I finally screwed up enough courage to go. I figured that if I went once, I could say I'd tried it and it wasn't for me, quieting the well-meaning but pushy folks.

The playgroup was worse than I'd feared; there were older kids there. Some of them were seriously "involved," as they say, and a couple had obvious behavioral issues. I escaped at a near run after an hour and Ellie and I both sobbed all the way home.

A few months later I gathered my courage and tried again. This time I loved it. There are three little blond-haired, blue-eyed, beautiful babies all born within a week of each other, all doing wonderfully. Ellie looks like a triplet. I now attend the playgroup regularly and value it highly, but it took me until Ellie was nearly a year old before I was ready.

When I shared my feelings at the training this morning, a more experienced volunteer cautioned us that this reaction is normal. Some new parents grasp for contact with other parents of kids with Down syndrome while some new parents need to hunker down for a while.

I like that. I do need to hunker down from time to time. When I hunker down, I focus on my child. I love her truly, madly, deeply. She is so precious to me. She is my child, first and foremost. Thinking about her Down syndrome gets in the way of that love sometimes, and I need to push it aside, hunker down in my little bunker with my baby, and focus on the little girl I know so well and love so dearly.

It's OK

2005-04-16T19:42:00.000-05:00

I have the spastic diplegia form of cerebral palsy. I've had it all my life and I always will have it. And I've had to use a wheelchair to a certain extent the whole time. But that's ok.
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It might not be curable but then if I was offered a cure I would more than likely turn it down. If I was offered the chance to have never had it I would definitely turn it down. I have had so many experience that I wouldn't have had if it wasn't for my cp and I've met some great people I wouldn't have otherwise (because they are doctors, nurses, carers, physios etc). Plain and simple I wouldn't be the Emma who sits here writing this if I wasn't disabled.

Actually if I had the chance to have had it but not to have it any more I would probably say "no thanks I'm fine as I am." Because even though I might have had the odd day as I was growing up where I hated it, it's never been that much of a big deal.

Having CP isn’t a problem for me. At times it is an annoyance, a difficulty I could do with out. But most of the time being disabled and perhaps having CP in particular (having no experience on a personal level with having a long term illness or being disabled through other circumstances I’m not really qualified to know those things) is something which I don’t even consciously acknowledge. It’s simply a part of my life, but it doesn’t rule my life. That's just because I refuse to let it.

If I woke up tomorrow and I could walk, if I woke up and I no longer had my comfortable little flat in Holland but instead had one in Italy I would freak out and there's no way I could cope. Not having CP might make me "normal" but really there is no such thing as normal just average. And average is boring.

Life with CP. It's not bad, it's not difficult, it's not something which is hard or painful for me and it's not something I need pity for. It just is.

And it really is ok.

that said... if someone offered to swop with me and have my CP for one day I would take them up on it... It's always nice to see how the other half lives!

~Emma

Learning to Love...

2005-04-15T12:59:00.000-05:00

I guess I had the inward belief (even if my MIND knew better!) that parental love was something that would come automatically...like the beating of my heart.
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We have three beautiful children…two adopted from China and one from Taiwan. The eldest is gifted, the youngest is as normal as rain and joyous as a Spring sunrise, and the middle child is my mystery. The oldest and the youngest became mine when they were still tiny infants. They were planned for...longed for...sought after. Then came our middle child. He was a crisis adoption...not planned for...not longed for...not even heard of until we were ‘finished’ building our family. He did not arrive as a tiny infant. He arrived as a six year old with profound challenges. As an infant, he sustained a cervical fracture which left him temporarily quadriplegic. To the doctors’ amazement, he regained motor function. He also survived a severe head injury. He still carries the scars in his scalp from the burr holes drilled through his skull to relieve the pressure of his brain’s swelling. His skull will always be pressed in behind his right ear...its asymmetry bearing silent witness to his injury so many years ago. What are not visible are the tiny scars scattered throughout most of his brain...small ‘dead’ areas that make speaking or correctly mimicking sound an excruciating challenge to him and remembering a slippery skill. Nor can he focus. The harder he tries to concentrate the more spastic and jittery and ‘spacey’ and distracted he becomes. After seeing the results of the CT scan of his head, our family doctor told us that the ‘lacunar strokes’ he had suffered most likely left their mark on areas of cognition, language, and memory...that often such strokes in elderly patients are misinterpreted as early signs of Alzheimer’s.

We did not enter this adoption blindly. We entered it prayerfully and with our eyes wide open. We had not sought our middle child out...but we believed then and believe now that he was our child, chosen for us. He IS my child...became my child, officially, nine months ago. It has been a hard adjustment, though. I had anticipated struggles in some areas that never materialized...his inability to put down solid roots in our family and open his heart to us. He had been bounced from place to place and suffered so much rejection and neglect (not to mention outright physical abuse through infancy) that I was braced for reactive attachment disorder. That is not my son, though. He is a tender-hearted, empathetic, loving child. What I was NOT braced for was an ‘attachment disorder’ of my own heart...

With my ‘mind’ I know intellectually that love grows over time and that instant bonding is not necessarily reality...that sometimes bonding is a gradual, elusive process...I know that intellectually, but when faced with the reality of it in my own heart, I cringe with guilt and self-recrimination.

In the beginning, this child became a wedge in my own rock solid marriage. My husband and I each had very strong (and very conflicting) opinions about how to relate to our new son. My naturally quiet, gentle, patient husband turned into (what seemed to me) a critical tyrant...berating the child (the only thing he actually seems to respond to) every waking moment over his failures to measure up to our family’s standards of conduct. Truly, this child did come to us lacking competence in even the most basic of self-care skills. We had to teach him how to LOOK where he was voiding...rather than spraying urine all over the bathroom as he bounced around and twisted in crazed distractibility as he would stand at the toilet. We had to teach his to WIPE himself after a BM. We had to teach him how to wipe up his bathroom messes. We had to teach him how to dress himself. We had to teach him how to use silverware, not scatter his food everywhere, not grab food off of other people’s plates…etc. We STILL struggle with teaching him to LOOK at what he is doing. If he is voiding, he looks everywhere EXCEPT at the toilet...if he is reaching for his glass at the dinner table, he will invariably have his head twisted the exact OPPOSITE direction of the path of his hand to the glass...so, nine times out of ten, his hand clumsily knocks over his glass instead of grasping it competently. At school, he fought other children...knock down, drag out fist fights. He would run away during recess and roam the neighborhood. He would walk out of class when the teacher wasn’t looking and roam the halls. He thought spitting on someone was a perfectly acceptable way of getting their attention. He reserved this for the people that he LIKED! He had no sense of personal boundaries. If he liked another child’s shirt, he would run up to within mere inches of the child and shove the child’s chest with the flat of his palm in his excitement over the illustration on the child’s shirt and in his desire to communicate (albeit unintelligibly--be the words Chinese or English) with the child about it. (Speaking as much Chinese as he does, I know that his spoken English has now surpassed his previous ability to speak in his birth language...but he still speaks only in a single words (not even phrases) and has atrocious pronunciation.) I say all this, only to explain that his entry into our lives was a stressful event. It took a LOT of readjustment between my husband and I to find our balance with each other again. We finally have. But, I think we are still struggling with finding our balance with our son.

When I write out what he was like when he joined our family, I see how FAR he has come in nine months. He doesn’t thumb his nose at authority anymore. He doesn’t run away from the playground or the classroom. He doesn’t hit other children anymore. He stands in line, keeping his hands to himself and he listens to his teachers. He dresses himself. He finally learned how to line his socks up correctly over his heel and toes and which shoe to put on which foot and how to zip his coat and his jeans….and how to pull his shirt over his head. He puts his clothes away….pj’s under his pillow and dirty clothes in the hamper. He cleans his own room. He can drink from a regular glass without drowning us all. He can eat without putting the handle of his utensil into the food...or spreading food on the table cloth with his drippy utensil. He knows how to use a fork and spoon now. He doesn’t trash our bathroom anymore. And he sometimes remembers to wipe his bottom. He blows his own nose...instead of obliviously letting it run down his face. It is good to remember those things. For, so often, all I can see is how far he has left to go and how hopeless it feels.

After eight months of struggling through the bureaucracy of the system, my son is finally in the special education program and beginning to receive much needed help. There have been huge gains. Why is it that the moment a gain is in hand, my mind dismisses it and only sees what HASN’T been accomplished yet? It frustrates me that my husband is always (it seems to me) putting the bar unrealistically high for our son...yet my own responses to his accomplishments aren’t gracious, either. It’s as though we both are just so exasperated with his day in day out behavior and so wearied by his hyperactivity and IMPULSIVITY that we can’t enjoy what he does do well. When he accomplishes something, our hearts feel like ‘well it is about time!’

He is so frustrating to teach. I am a homeschooling mom, yet I dread even trying to help my son (the only one in public school) with his worksheets. His attention span is about one and a half seconds long--literally. He twitches, jerks, and squirms incessantly and his eyes flit from one end of the room to the other constantly on ‘scan’--never on ‘focus’ or ‘pause’. But, what frustrates me the most deeply is that when I finally have seemed to SUCCEED with teaching him something (the letter ‘M’ for example), a day or two later it is as though he has never even been exposed to the concept before. This is not willfulness. It is complete inability either to store the information in memory or else to RETRIEVE it once it has been stored. It is so frustrating. Even his successes become a frustration and discouragement because I know from experience that what he knows today, he very likely will be an utter stranger to tomorrow. I get so tired of starting all over again at square one. What makes this even more frustrating is how OBSESSIVE he is with the things that DO interest him….like Spiderman, Batman, and Legolas (of Lord of the Ring). THESE words he can say. They are the majority of his spoken vocabulary. THESE images he can remember. THESE things he fixates on...chattering on and on unintelligibly about them CONSTANTLY. He can’t eat his food because he is fixated on the superhero of the moment. He can’t listen to family members because he is so intent on chattering away about the superhero. Every waking moment is constant obsessing about the superhero of the moment...incessantly begging for a costume in the superhero’s image...constantly vigilant for any product at the stores and in the community that bears the superhero’s mark. Why can’t he obsess about the letters of the alphabet???!!!!

What distresses me most of all, is my own heart. It grieves me that my love for my own son waxes and wanes...swinging on the pendulum of my own emotional equilibrium. I do not love him the same way I love my nine year old daughter and my three year old daughter. I remember when we approached our second adoption, truly fearing in my own heart that I might not ever love our second child with the same intensity that I loved our first. How could any child ever measure up to the one we already had? Our first child excelled at anything and everything she tried. She was so intelligent with almost a photographic memory and so talented--musically, physically, intellectually. I secretly feared that any other child would be a hidden disappointment to my heart. I was wrong. Along came our second child...nothing at all like her sister. The only area she excels above normal in is her love of relating to others. She never met a stranger and takes for granted that everyone will love her...those are her self-fulfilling prophecies! She stands out in a crowd, capturing with natural ease every heart she gazes towards. She isn’t unusually bright or particularly talented in any area or even possesing the striking beauty her older sister was graced with, but she stole my heart utterly. She came to us so emotionally neglected and so emotionally needy. As a nine month old infant, she banged her own head repetitively and would rock herself back and forth furiously, withdrawn into her own self, staring blankly ahead. But she was STARVING to be touched and held. And that little baby captured a part of my heart that I never even knew existed. I didn’t have to worry about finding room for her in the part of my heart that already belonged to our first child. Caught in the gaze of her sparkling black eyes, a part of my heart that I didn’t even know I had was forever lost to her. So, when we approached adoption number three, I didn’t worry that I might not love that child as I should...it would be the same way all over again...but it wasn’t. For the first few months it felt like I was babysitting some neighbor’s child. He doesn’t feel like the neighbor’s child, anymore...but...
I honestly DO love my son. If I had no other children, I wouldn’t know that something was amiss in my own heart. But, I DO have other children...and my heart knows that it does not receive him the same way it does the others. I realize this in odd moments. Like the other day when we were walking in the parking lot towards the entrance of the WalMart...all three children were strung out holding hands as I held the hand of the youngest. I wanted the two older ones to break off and walk in front of us so that we would not be meandering into the line of traffic. You know how you internally size up a potential hazard? The fleeting thought that registered in my mind was that if one of them were injured in our current configuration it would most likely be my son. And in that nano-second, I saw my own heart and knew that if I had to lose one of them, my son was the one I would choose to lose. How can a mother ever choose?....even hypothetically in the most secret recesses of her heart? When the day comes that I could NOT choose, I will know that I truly have learned to love my son. Learning to love...what a strange concept. I never thought I would have to LEARN to love my own child. I thought it would be instinctual and inescapable...not capricious at best, and sometimes downright elusive.

Monica

Even the good days are exhausting

2005-04-12T06:10:00.000-05:00

The thing that no one tells you about being a special needs parent is that even on those days when you feel like you're winning, the fight still sucks the life out of you. No one tells you that the depression is still lurking there, and the exhaustion, and that feeling that even now, you're fighting something bigger than yourself, something that never sleeps and will never give up.

I look at photos of myself from two years ago, and I swear I've aged ten years.

Child-Directed Living

2005-04-01T00:39:00.000-06:00

One of the reasons that infancy is so precious is that it's so fleeting. There are only a few months when your little bundle of joy is a snuggly round ball of (mostly!) sweet-smelling baby, content to be carried around all day.

By 18 months, kids are so independent. They run around, they talk, they let you know what they want. And the play, the play - it's child-directed. Child-directed play. Walking around. Talking.
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I wonder if other parents ever think about how much easier it is when you can occasionally put your child down in the store or outside without sitting her on the filthy floor or ground. I wonder if other parents cherish each time their children run up to them with a toy, saying, "show me!" I don't know, because they all seem to talk about how exhausting it is to have to run after toddler all the time, listen to them asking "Dat?! Dat?!" (What's that?) over and over, go to the park again and again.

Ellie is 17 months old. She's a great little babbler and mimic, but she doesn't use language (that I can understand) spontaneously on her own much. She doesn't stand unassisted. She doesn't walk. Things could be so much worse. There are so many things that she does do, and does incredibly, unbelievably well. But -

On days when it's just the two of us at home alone all day, like this week when she's had a cold and we haven't done much, it's so exhausting. I'm exhausted by not running after a toddler. I'm exhausted by mommy-directed play, where I entertain, entertain, entertain, and hope that I happen upon what she wants. It's hard work and it's emotionally exhausting.

Infancy was unbelievably precious, yes. And now, ungrateful me, I am ready for the next phase, please.

Memories of Holland

2005-03-31T17:36:00.000-06:00

On a curvy two lane road, well off the beaten path lies a little town called Holland, Texas. There is nothing to mark its location except for one plain green exit sign along the everyday bustle of the busy interstate. There are no glitzy tourist attractions, nothing to beckon you in, nothing to give you a good impression of the journey you are about to embark upon. How I found myself in Holland I will never know, but it was not an accident that I made my way to that tiny town. I was not lost. I just did not know where I was headed. Not very many people have heard that a village called Holland does exist, let alone been there or had a cause to visit. No, You do not go to Holland unless you have a reason to be there.
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When I first heard of Holland I thought it was this far off distant land that I would have never traveled to. In reality, it was far closer than I would have ever anticipated. I did not have to cross a vast continent, or conquer a raging ocean, just simply go for a drive down the road I was being led to travel. My stay was brief, for I was only passing through. But I took the time to get to know the surroundings and to learn to find and appreciate the beauty in the quiet times, in those precious few moments. I did not have a need for the travel guides, or the maps since it was Faith that guided my way through. Nor for the translation books, because Love, Compassion and Friendship are a universal language to be understood by those willing to open their eyes to see beyond the obvious and their hearts to feel what truly lies within themselves.

The landscape of Holland was not that much different than that of my own hometown. Wildflowers filled the gently rolling hills, even the bluebonnets were in bloom. Small cottages dotted the countryside along the crooked little creeks. So far everything looks perfect. A few miles up the way there is a sharp turn in the road. Before I know it, I am right at the city limits sign, wondering what in the hell just happened? How did I get here from there? I decide that I am not lost, so I park under a giant oak tree to watch the local happenings from afar. This place is not that unpleasant I think to myself. Holland does not look that much different than my hometown. I take a deep breath and edge forward, and decide this would not be a bad place to live.

The town of Holland was not the picture perfect post card that you might imagine. On first glance, it appeared to be a tired, exhausted little town with a few run down Old Victorian manors and the newer, plainer homes. A few old buildings scattered the two block long main street and several churches made room for the faithful. To appreciate the local architecture, you had to look at the inner structure of these dwellings- The true foundations that these homes are built upon. The elements that hold these structures together are the love, the determination, the patience, the endurance and the faith to sustain any force that comes against them.

The people of Holland are a closely tight knit community of hard working and hard loving people that have learned to appreciatethe special moments that make it worth being there. A group of people brought together by one common bond, who have taken the time to become deeply engrossed in every facet of each others lives. They are your neighbors who understand it all, for they live in Holland too. Long term plans are not made in Holland; The people there take life, one month, one week, one day, one hour, one minute at a time. Some residents settle in for a lifetime, some just stay for awhile, and others never have the chance to get out of the car as they pass through town. Holland was not my first choice for a place to live, but I accepted what I thought was a lifetime of adjustments. I would have gladly set up a permanent homestead and made a new life for us there if that is what it took to keep my family under one roof.

There is only one road guiding you into Holland and it is a one way street, but there are two roads out of Holland. One leads up towards the heavens. The other path leads east beyond the horizon towards a new sonrise, a new day and a new chapter of life. My precious child took the path upward and departed Holland on the wings of Angels. There was only room for one, a place reserved especially for her. Hers is a journey I could not travel with her. Barely did I have time to kiss her forehead and stroke her cheek and hold her hand while praying for dear life before she set out on her own adventure. I was left to take out to the east. Yes, it was quite a different route out of Holland than the one I came in on. It too, was a path far less traveled than the first. This road, a lonely single lane gravel road, full of bumps and ditches still has its own rustic bittersweet beauty. It has bridges to help get me where I am going, to carry me over the deep trenches when I can not reach it on my own. This trail of tears is not as dark and desperate as one may think; there are nice little houses and wildflowers and butterflies along this road also. Things to show that there is hope and happiness, that there is life beyond Holland's borders.

My passage through Holland lasted exactly 400 days. Not a day more, not a day less. 400 life altering days that I would not change for anything the world has to offer. Why only 400 days is the question constantly on my mind. 400 days is only minutes in the grand scheme of things, but it was a lifetime worth of memories made by one little girl. These are the memories thatI hold on to dearly, until this momentary separation is over and I can hold her in my arms once more, to never have to let go again.

I have come full circle since my journey to Holland began. I don't know if I will every make it to Italy. For now, I am somewhere in between. I have learned more, loved more,cared more and cried more than I ever thought possible. I loved Holland and made many wonderful friends and will continue to visit often. It is, after all, just down the road.

I am back at my old home now, but it will never be the same again. Someone is missing. There is a passenger that did not come back with us. I have the souvenirs to remind me of that glorious journey, the pictures,the clothes, the toys, the blankets, the empty crib beside my bed. They are a constant reminder that a crucial part of myself, a part of me that I helped to give life to, that I carried inside for nine months and carried in my arms for 13 months, was here, if only for a short while. We were there for her, but more importantly, she was here for us. Part of my dreams, part of my hopes, part of my heart now remains in a place called Holland. Yes, Faith guided my way and Grace will lead me home.

For Gracie,
born January 14, 2004
received her gift of Eternal life February 18, 2005
after two liver transplants

I Miss my Baby

2005-03-30T17:01:00.000-06:00

Having family who lives in the same town you do is always a plus. OK, maybe not ALWAYS, but it certainly seems to have its benefits: built in baby-sitters, free meals, a peaceful night alone with the hubby, etc. And this week my parents and my in-laws have proved especially useful.
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As a parent of a now-immune suppressed child, I have learned the danger of germs. You sneezed? Please go wash your hand in bleach. You coughed? There’s a battery-acid rinse in store for you. Fever? Let’s not even go there.

And then I did. Sunday night while “Eastering” at my in-laws, I noticed that I felt a little warm. Out comes the trusty thermometer I carry everywhere and bam: 102.4. WHAT? Two things: I apparently didn’t learn the rule that Mommy’s don’t get sick; and two, 102.4? Really? I take my temperature again. The thermometer must have been wrong the first time because the next six times I take my temperature, the thermometer reads 102.9. NICE. I down half a bottle of Tylenol, and pray that it will go away. Meanwhile, what do I do with Anthony? He can’t be around me even though he’s been thoroughly exposed (hey, I didn’t feel THAT bad when we were wrestling on the floor ten minutes ago!). My mother-in-law has a panic attack (literally) thinking Anthony is going to get whatever rare disease I must have and will have to have another liver transplant.

Hey, what about the woman who has the fever? No sympathy for her? Hmph. I’m shipped home in the care of my husband who is shooting me dirty looks for getting a fever in the first place.

Monday I stay home from work and sleep all day. Tuesday I’m no better so I head to the doctor. I have....drum roll please...the FLU. Shit. I’ve NEVER had the flu. Never. And I got the flu shot in the fall. Of course, I know I got a different strain of the flu than what I got in that shot. I’m still pissed.

Hubby comes home from work Tuesday night burning up with fever. He tops out at 103.3. I dose him up with Tylenol and the script my doctor gave me. We sleep and sleep and sleep.

I have now been fever free for twenty-four hours and will go back to work tomorrow. Hubby has been fever free all day. Yahoo.

Every time I call to check on Anthony, I hear “He’s fine. He’s reading a book with Grandpa/Paw Paw” (depending on whose house he’s at). So they put the phone to his ear and I say, “Hi baby, it’s Mama!” and back through the phone comes, “Mama?” and then the sobbing commences. On both sides of the phone. He doesn’t SEEM to be fine, he’s crying for his Mama! Oh, my heart is breaking. And all I can think about is, “I want my baby!” Not, “Thank God we have family who can take him so he won’t get sick.”

I miss Anthony. I miss the little snuggly hug he gives me before bed each night. I miss the big grin he gives me when I go to get him out of his crib in the morning. I miss those fat little legs running around the house while I chase him. I want my baby back!

Confessions From a Germaphobe

2005-03-23T11:27:00.000-06:00

As my son and I scanned the isles at the shoe store
A choking gagging sound
made its way up and over the volume
of the joyful, buy me, buy me, shoe shopping music.

I peered around the isle and saw a mom
frantically and unsuccessfully cleaning throw up
from the floor mat just inside the front door.
The mysterious barf child was nowhere in sight.
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My eyes grew wide
my heart started pounding
I turned towards my son “We have to get out of here!”
His pleading eyes looked down to the box
that held his prized black and red Vans shoes.
“But Mom?”
Resigned to his need for the shoes
I slowly approached the cash wrap area.

The throw up lady was checking out.
I watched in horror as her fingers
pressed the buttons on the credit card swiper.
Her germ covered hand reached
for the pen that Mr. Happy Shoe handed to her.

My curious eyes tried to avoid the scene of the crime
but there it was
the vomit encrusted welcome mat.
Welcome to my nightmare.
Innocent victims were walking through it.
I had to turn away… it was too much to bare.

It was our turn….
I looked at Mr. Happy Shoe and asked about the barf child
I confessed, “I am sort of germaphobic”
His concerned look made me continue
“I’m not weird or anything”
My son's cheeks turn red with embarrassment in disagreement.
“My daughter had a liver transplant 2 months ago,
she’s at home with Daddy”
Mr. Happy Shoe looks concerned
he nods his head, asks the appropriate questions and offers me the germ-infested pen.
I reluctantly take it since I don’t have mine.
I reach into my purse and grab my Purell.
I douse my hands, my sons.
The smell of alcohol envelops me, reassures me, shields me.
We leave.

As we drive away I put serious thought into resuming my search for a kid-sized plastic bubble.
The kind that hamsters roll around in…

A tear rolls down my cheek.
Evidence of
the frustration
the madness
of a germaphobe.

Mama Knows

2005-03-23T05:30:00.000-06:00

A little poem I wrote....

You may not talk like other people,
But Mama hears you.
You may not walk like other people,
But Mama sees you move.
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You may not learn like other people,
But Mama understands your hunger for learning.
You may not cry like other people,
But Mama knows you hurt.
You may not be afraid like other people,
But Mama knows your fears.
As your Mama,
I know what you're trying to tell me
When you "talk" or sign.
I know you're walking in your own way
When you hold onto my fingers.
I know you're learning all I teach you.
When you're sitting on my lap at the computer or reading a book with me,
I know it hurts you,
When others tease you.

As your Mama, I know,
You're not afraid of monsters or the dark,
Cause your fears are bigger.
I know you're not like everyone else.
You're different and special,
I know you haven’t lost your innocence yet,
wise beyond your years in some ways.
I know you can make people laugh and smile
Without a single word.

As your Mama, I know,
It’s not always going to be easy for you
I know you will need me to
Cry for you when you can’t cry for yourself.
And I know you will need me to hold your hand along the way
If you're frightened.
I don't know how I know all this,
But as your Mama I just know.

coming to terms

2005-03-19T22:15:00.000-06:00

Some rambling thoughts. Feel free to ramble yourself.

I love the wisdom of the piece "Welcome to Holland" by Emily Perl Kingsley. But some days I have trouble believing the message of this wonderful parable, the assertion that "Holland" is just a different place than "Italy." Not only not a worse place to be, but even a place with its own attractions.
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How can it not be worse that every illness that comes her way could put her in the hospital? And usually does? How can it not be worse that she has to take medicine 5 times a day with listed side-effects that leave me queasy? How can it not be worse that after two transplants, her liver is still a major health issue? How can it not be worse that transplant #3 looms threateningly at some uncertain future point? How can it not be worse that she has to undergo CTs every 3 months to monitor the lymph nodes that have massed like little soldiers throughout her neck and abdomen, ready to rush forward into a full blown lymphoma battle at some secret signal from her confused immune system? How can that not be worse than normal?

And be sure here, that my question is not "How could it be worse?" We have seen that the spectrum of childhood suffering is alarmingly broad, and I know my daughter, Annika, has not experienced its very lowest points. My question is, how could this life she's been forced into not be worse than a normal life? A life without major medical issues advertised on a little silver bracelet worn around her tiny wrist?

I confess I have really been trying to work this through, mulling it like a little puzzle. Like a philosophical essay that I've read and suspect that I really like, but secretly don't really understand. How do you finally decide that you are just in "a different place," but stop regretting the change of flight plans?

The answer that is suggested in the Holland parable is that you have to begin to notice the great things that are peculiar to Holland--the tulips, the windmills, the Rembrandts. But, really, this is easier done in the metaphorical case of an unplanned vacation to a fabulous European country. In Holland, you can point to physical things and say to yourself, "This is here. This is good. And it is not in Italy." But with my daughter, can't I just imagine her healthy? And wouldn't she be the same sweet, loveable girl? Just with fewer scars? And fewer tears? Wouldn't she be happier?

But maybe she wouldn't be--neither happier, nor the exact same girl. It's like trying to imagine how you would be if you were rich. The fantasy, of course, being that you would be the same person with the same values, only with a lot fewer worries. I recently spotted a poem by A.R. Ammons in the backlog of my New Yorker magazines that opened with, "The poverty of having everything is wanting nothing." My first reaction being, "Whatever. Oh, for those problems." I nevertheless read the poem through, following along its evocation of a vacuous wraith wandering the Mall of America listlessly. It seems a tired idea to me that an improvement in your situation will also lead inevitably to a detriment elsewhere. Or the flip side of this kind of thinking--Nietzsche's overblown "Whatever does not kill me makes me stronger."

But, still, if our firstborn would have entered the world with not only 10 fingers and toes, but also a working liver, would we have had the same little girl? Is my yearning to have an Annika who was never a little jaundice-yellow baby, who never toyed with the I.V.s in her arms, or wore a stethoscope like a fashion headband, or cried when her nurses sang "Happy Birthday," or pointed to the huge scar on her belly and murmured, "This is my life, right here..." completely unrealistic? If we subtracted those things, and all the other million little things about our girl that are the direct result of her experiences as a child born with a dying liver, would we no longer have Our Annika? Would she be a completely different child, without the experiences she has gone through? If that's the conclusion I would have to reach, then I could never again wish for things to have been different. Our Annika is the light of our mornings and the warmth of our summers.

But suppose that we had never even gotten to know and love our real-life Annika, and had instead given birth to the liver-disease-free Annika, the Italian Annika. Of course, we would have loved that Annika, too. But would our lives have then been easier? Better, even? Or are there aspects of this life in Holland, enjoyable ones, that we would never have experienced in Italy? Do we enjoy our good days just a bit more? Take the healthy and happy days a bit less for granted? Does Annika have some spark, the forward momentum of wanting, that she would otherwise lack? Does the fact that our daughter's life was saved by strangers in the midst of their own tragedy connect us a bit more closely to all the unknown human beings we pass in the world each day?

In the end, I think the only way to take "Welcome to Holland" is not so much as a description of how our lives actually are, as an inspiration for how we should live them. Without regret for how we might have been, and actively searching out the landmarks and accomplishments that make life here worthwhile, and perhaps even sometimes enviable.

Some Days

2005-03-16T02:05:00.000-06:00

Some days are better than other days.
Some days Ellie talks when the speech therapist is here.
Some days a mom of a similarly-aged child says, "Jack just started doing that too!"
Some days Ellie shows me that she understands something far better than I thought she did.

Other days are harder.
Other days I realize that she's not going to grow out of this.
Other days I realize that this battle is just beginning, and we're still at the easy part.
Other days I worry about the future.

Every day she melts my heart with her smile, anyway.

Always Have Hope

2005-03-14T20:48:00.000-06:00

Poem written by rojo for daughter with rare, genetic bone disease (1 in 2 million). The feelings in this poem seem to alway be present..somewhere within myself. However, my life with a child who has a chronic disease (no treatment or cure yet) can not only get a bit murky and very dark but overwhelming and despairing. Hope is what keeps me going. Blessings
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Always Have Hope

When you struggle for answers, and are trying to cope,
Believe in your heart...always have hope.
Hope takes you farther, is ready to go,
Hope holds the vision,when others say no.
Hope is the river; strong, full and deep,
Hope knows no limits, no mountain too steep
Hope for a treatment, hope for a cure,
Believe in a miracle, holy and pure.
Hope hangs on, believes in the best,
Hope is a journey, each minute a test.
When your spirit is weakened and you're trying to cope,
Believe in your heart..always have hope!

Copyright ©2000 JAC

Superhero

2005-03-07T21:01:00.000-06:00

Another guest essay from Robyn H. I promise the last two sentences will get you.

For more than a year Jacob wore a cape. His favorite was an old, pink receiving blanket. We would stretch it so that it could drag along the ground like a real Jedi. He also had a gingham blue apron and the red satin cape from his superman pajamas. When these were lost or in the wash he would ask us to tuck anything, an old t-shirt, a dish towel into the neck of his shirt. Most often he was a Jedi, a sort of intergalactic superhero. A wedding invitation and a magazine subscription addressed to Jedi Master Jacob made it official.
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He saved our house, the city, the planet on an everyday basis. Assorted villains paraded through our bedrooms and our backyard.
“Where’d they go?” he’d yell, running into the kitchen as I made dinner.
“Go get them! They’re behind the couch!” I’d say. And he’d run off to do battle. They never had a chance.

During this caped time, my parents were over for dinner,it was Jacob’s 3rd birthday. As we ate, Jacob started talking about the baby. What baby? The baby girl, the baby sister, he answered. We looked at each other, perplexed. What no one knew (but me of course) was that there was a pregnancy test in my purse that I was going to take the next morning.

Jake was a superhero nearly every waking minute that pregnant year. He’d wear a cape to the babysitter, the Y, the grocery store. Strangers would smile as we passed. Remembering another little guy who thought he could save the world?

Jake was about 3 and a half when his sister was born. As I’ve recounted to countless medical personnel- she was full term after a normal pregnancy, slightly jaundiced within 2 days after birth. Tests showed elevated liver enzymes, but they allowed us to bring her home.

Jake insisted on showing her around the nursery. (Note: Pale green with giant yellow polka dots is NOT a great color scheme for the infant with persistent jaundice).
“And here’s the crib, your wall, your place for clothes,” he lisped like a little Elmer Fudd. Emma watched in that big eyed newborn stare. As if to say, “What the hell?”

From almost the first night, Jacob would sneak in to Emma’s room and curl up on the floor next to her crib. I think he was overwhelmed by love and felt an obligation from moment one to protect her. A 3 year old superhero knows full well the risks out here in the big world. In your very own house there are bad guys and villains and monsters . The last thing he was going to do was let this little nugget, a tiny morsel who couldn’t even talk or sit up (let alone wield a lightsaber or throw a punch) sleep undefended. After several weeks of kicking him in the head, or stepping on his sprawled legs in the middle of the night we convinced him to sleep in the extra bed not 4 feet from her crib- a short enough distance to leap upon any evildoer unfortunate enough to try and hurt his sister.

Emma had Biliary Atresia (BA) one of several dozen rare childhood liver diseases, the commonest of the uncommonest. At 6 weeks she had the surgery that can sometimes buy BA children time before they need a transplant. But like all chronic liver diseases (really all diseases) she got sick a lot and had complications and our lives were no fun for a while, to put it mildly.

Jacob and I would lie in his bed at night, after teeth brushing and storytelling and and we would talk. We would review his day and talk about God, about Star Wars and about sister. One night, not long after a 2 week hospital stay that ended on Christmas Eve, Jacob suggested we hang a sign on our door, to keep people away, both strangers and friends.
“Oh honey,” I said, proud of him for being so protective, “People didn’t make Emma sick…”
“No, mommy,” he interrupted, “So I don’t get anyone else sick like I got Emma sick.”
Right about there is where you can hear my heart break. I started crying. “No, no, no honey,” I stammered, “You aren’t the one who made Emma sick. Emma was born sick. Her liver makes her sick. I’ll show you tomorrow where her liver is . Daddy will tell you.”
And I got Phil to come in and tell him in no uncertain terms that it was true. I told Jake we would ask Emma’s GI, a kind and funny man, to tell him too. Imagine it, here you are a superhero and not only can’t you save your own sister, but you believe you’re the one who got her sick in the first place.

Emma had her transplant. At church now, we get asked about her often. Jacob stands patiently by while they ask questions about his baby sister. Yes, she’s doing well. Yes, prayers were answered. We are so, so thankful for her. And I want to add, “And look here. Here’s my son. Every bit as wonderful. A little man that we thank God for just as much.” Because in his own way he went through as much as his sister, maybe more. Because he will remember this long, awful year and she gets to forget.

Jake is the one his sister smiled for the most, even when she was too sick to smile for anyone else. Emma is the one who could make her brother smile in return. Jake has never given her one bitter medicine, never held her down to insert a nasogastric tube, never held her kicking feet while some damned (Emma’s word, not mine) person in scrubs tries for the umpteenth time to draw blood or insert an IV because the last one blew and we still have 3 days of antibiotics left. He never peeled the dressing off her raw, red broviac site. He never handed her over to a bunch of strangers who were going to make her feel horrible again. His only 2 jobs as he saw it and still does were to make her happy and watch over her. These are difficult jobs for anybody looking after a baby, but seemed especially daunting with Emma. Jacob, I’m sure if you asked him would tell you that not only was he up to the task, he was the one who could do it best.

Sometimes I hear people describing their special child, their miracle baby, their hell-and-back story. I think I know what they’re talking about. Their child withstood countless events- physical and psychological- that most adults would run screaming from. I can empathize somewhat, I hope, with their pain. And I want to tell them about a certain miracle in my house. A boy who is a superhero, poorly disguised.

The Amazing Card Drive

2005-03-04T03:25:00.000-06:00

This post was inspired by some of Moreena’s suggestions! She asked what one of the most amazing things someone had done for us……

In our case, it wasn’t just one someone, but many someone’s! Two years ago, Noah, was about to have a major surgery to lengthen his heel cords and to put a steel plate in hips. This was going to be a long surgery with a long recovery. He would be in a body cast for a few weeks and then half leg casts for a few weeks and would have to be hospitalized multiple times for the surgery and rehab. All of this was taking place right before the holiday seasons! (Thanksgiving and Christmas)
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One of my nieces, Holly (she was 17 at the time), was trying to think of something to do for Noah to show him how many people cared about him. He loves books and mail- so she came up with the idea of doing a card drive - having people mail Noah cards. We wanted to promote this on his website so I decided to open a PO Box. Holly asked me to help make up a flyer to hand out. She also emailed the local paper about it to see if they would run something about it. Shortly after she emailed the paper, a reporter called me and came out and did an interview and took pictures. They ran the article on a Monday - Noah’s surgery was on Thursday of the same week. On her way to the hospital, Holly stopped by the post office and picked up the cards. When she got to the hospital, Noah was already in the operating room and we were all sitting in the waiting room. She walked in with a HUGE stack of cards - 318 to cards to be exact! Our family sat in the waiting room and each took turns and opened the cards and read the aloud. I was so overwhelmed! Noah received so many cards with well wishes, prayers, stickers, coloring books, and even some money! The cards that touched me the most were those from family members of special needs children. The cards that Noah loved the most were the ones from other children, hand drawn cards from local elementary school classes.

The cards kept pouring in and a few days later, the reporter came to the hospital and did a follow up piece. When it was over, Noah ended up with over 1,000 cards from 36 states!

Every person who sent a card, my niece Holly, the reporter, and everyone involved with the card drive did something amazing for Noah and our family. We were so touched that there were that many people out there in the world that would take 5 minutes and 37 cents to put a smile on a little boy’s face!

problems?

2005-03-01T17:27:00.000-06:00

I have been getting intermittent reports about the blog not loading correctly, or not being able to post a comment without waiting forever. Please email me if this happens to you, so I know how frequently it is happening. I might need to submit an official problem report. Thanks!

Misery Olympics

2005-02-25T21:11:00.001-06:00

I was just sitting around chatting with my husband the other night about the issue du jour on some of the blogs I enjoy. When I gave my husband the set-up, he responded immediately with exactly the same thoughts that I have on the whole hoolabaloo.

Me, beaming: "Wow! Noone else said exactly that same thing, and that's just exactly what I think! I knew I married you for a good reason."

Him, pointedly: "Well, that just goes to show you should spend less time involved in those internet-y discussions and more time talking to me."

Me, getting his point, although I said: "Well, discussions aren't always as much fun when you agree on everything. But it is too bad when everyone gets all upset over the disagreement."

Him: "Well, that just goes to show that you just shouldn't talk to people."
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Once again my beloved curmudgeon of a husband cuts straight to the heart of the problem. Talking to people is hard. We are always saying hurtful things with the best of intentions. We talk to connect to one another, but often end up alienating one another instead. And in talking to one another, we cannot help but compare their experiences with our own. We are, at heart, supremely self-centered beings. I don't mean that in a necessarily derogatory manner, and I do think that in our best moments we do try to be empathetic creatures. But the sad fact is that none of us is completely able to understand the feelings of another--there's no vulcan mind-meld available to simplify the process of trying to understand.

But still we do talk to one another. Or we write things, and wait for a response from somebody, somewhere. Mostly what we wait for is a positive response, truth be told. And mostly what we write about are our difficulties, and our pain. Even if we write about it with a light-hearted tone and even if we acknowledge that, really it's not such a big deal but gee wouldn't it be nice if DD could just master the potty sometime before she graduates high school? And mostly what we end up getting back is, "Yeah, I know. My DD just finished her Ph.D. and I'm still buying those night-time pull-ups and calling to make sure she remembered to wipe every day." There's something about upping the conversational ante by pulling out your own experience, which was oh-so-much-worse, that is just irresistible to us. I mean, imagine the same conversation above, but instead of responding with the story of Dr. Skidmarks, instead you get someone who says. "Oh, I'm sorry, dear. My DD was potty-trained shortly after her first birthday. You just have to be firm, you know." Ugh. What a killjoy. I can guarantee that that conversation is going nowhere.

Eventually, though, we're going to start talking about something much more emotionally fraught than potty training (although that is really pretty darn fraught when you're holding yet another pair of pooped up undies in your hand). Eventually we start talking about our depression, our battle with cancer, and our children's pain. And suddenly responses that "up the ante" just aren't the same anymore. Suddenly those comments start to feel agressive, as if they are belittling your pain. And sometimes those comments really are agressive, and really are belittling your pain. Sometimes they take the form of, "You're kidding me, right? You have no idea what pain is. Here's what I've gone through. So shut up." Or sometimes those comments are more well-intentioned and take the form of, "Hey. It can get sooooo much more worse. So get a bit of perspective and count your blessings, OK?" It becomes the Olympics of Misery, with story after story, each one more horrifying than the last.

The first approach, I'll call it the "Shut Up" approach, is just completely useless and mean. But there aren't that many people out there who have the cajones to take this full-on in your face attitude. The second, I'll call it "Shucks, just here to help," is rampant. Actually this approach is just the first approach prettied up some, but I do believe that it can come from a well of good intentions. But really "Shucks, just here to help" is no more helpful than "Shut Up."

The main problem, which many have noted, with this sort of "perspective-adjustment" is that it seems to lead to the conclusion that noone is allowed to feel pain as long as there is some way the situation could be worse. And that's just not reasonable, is it? I guess one could argue that there is some place along the pain spectrum at which the situation is bad enough that it warrants a bit of bitch and moan, but I can't for the life of me think who would be qualified to make that cut.

Most of the time my own perspective adjustment is coming from my own personal constant internal evaluation, that little voice that picks apart every moment of our lives and examines it for any tasty nuggets of Life Wisdom. We humans are these odd creatures, the range of our emotions mostly defined by our own experience and just not good at all at figuring out how to feel based on someone else's experience. In my own life, I remember that first blood draw on my daughter at 4 weeks, and it was absolutely horrible. The worst feeling I had ever felt in the world at that time. Within a year, we had gone to a place so much more horrible that that blood draw seems ridiculous now. We still go for blood draws on a weekly basis, and they're no big deal now.

So I have found a new perspective, but I suspect that much of that has to do with my own experiences. Still, isn't possible that we really are capable of learning from listening? I think it has happened to me, but only in my less emotional times, when things are going relatively well for me and my family. I certainly hesitate to think that I would use someone's life as an example of "At Least That's Not Me" to try to keep my own sun shining, but there are certainly times when someone is able to remind me to be grateful. The best example of my own perspective adjustment was from a total stranger, and she did it in just 4 words.

It happened like this: One day Annika and I were at the mall, and Anni wanted to play on the coin-operated rides right outside of Kohl's that function like the La Brea Tar Pits for Young Children--just try and drag them away from those little cars and trains with blinking lights that offer less motion than most infant swings (at 50 cents a pop). Luckily, Anni didn't actually need the stuff to be moving to have fun, and so I just sat down next to another mother to watch our kids clambering over the equipment. We started talking, as mothers always do to while away the massive amounts of time we spend just watching our offspring's every movement, and of course the subject of Annika's transplant came up. Now, usually when this comes up the other mom will gasp and say, "Oh my gosh! How have you all made it through all that? That must have been so hard!" etc. etc. But this mom, with her accent clearly placing her as a citizen of an African country, just said with all wonder and seriousness in her voice, "You are very lucky." And that was all that she said on the subject. But with those few words, I remembered that a large portion of the world does not even have access to basic health care for children, much less transplants. And even in those countries that do offer transplants, there are very many that have organ donor rates so low as to make a transplant for a child extremely unlikely.

And of course I know how lucky we are without having to be told on a daily basis. But it's nice to be reminded sometimes. In a non-aggressive fashion, of course.

an open call

2005-02-21T17:40:00.000-06:00

I've been thinking about inspiration
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and writing and the entries I would love to read and comment on (or maybe you're all just busy leading your incredibly complicated lives!). It's probably because I've lately started to read books by writers about the whole process of writing. Currently, I'm on the excellent Bird by Bird by Anne Lamott (yes, Robyn, your essay sent me in this direction).

In case you would like some ideas to respond to for an entry, here are some I've been thinking about lately:

How has your relationship with your husband/family/other children/friends changed since your child's birth/diagnosis? What are the changes for the good, and also the less good (if you know what I mean, and I think you do)?

What are the dreams you have for your child? Are there any obstacles to those dreams? Does your child have his/her own dreams for him/herself?

What's the most amazing thing your child has ever said/done?

What's the most amazing thing someone else has ever said/done for you?

What's the most hurtful thing someone else has ever said/done to you? Did they intend it hurtfully? How did you respond? Do you wish you had responded differently?

OK, I could go on and on (and you know that's oh so true), but that's enough for now. So maybe over the next few days you all might want to pick one of these topics and see if you can come up with a paragraph or two (or more, if you're like me).

I love it when........

2005-02-21T16:00:00.000-06:00

Often times, as the parent of a child with special needs (especially one with developmental delays) we are forced to focus on what our children can not do or does not do. I am feeling a little down today, so I made a list of some of the things I love about Noah and wanted to share them.....
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I love it when Noah..........

* Says Mama. He accents the second syllable. Too cute!

* Wakes up early on Saturday mornings in the silliest mood and get in the bed with me and Daddy.

* "Yells" at me with signs. (If I am not paying complete attention to Noah and he is signing to me, he will sign really forcefully until I pay attention!)

* Brings books to me to read. That child LOVES to read!

* Wants me to teach him new things.

* Sits in my lap at the computer and “helps” me build websites.

* Gets “stuck” on my cheek when giving me a kiss.

* Holds my hand on the roller coasters without me asking him to!

* Gets concerned about people if they are not feeling well.

* Bounces on his knees like Tigger!

* Gets excited and does that crazy thing he does with his arms!

* Rides all snuggled up in his wagon.

* Pokes that lower lip out just like I used to!! :)

* Is silly!!!!!!! He can be soooo silly!

* Sign to me!

* Slides down the slides at the parks!

* Asks me to sing to him.

* Navigates his own way in his wheelchair!

* Crawls down the stairs backwards! (Ok, so it was a little scary the first time he did it!)

* Wants me to sing along with his Signing Time Videos! And fusses at me if I don't do all the signs!

tonight is not the night

2005-02-19T08:12:00.000-06:00

I posted this on my personal blog, but it also seemed appropriate here. Forgive the double posting.

The unfinished entry for this journal that I currently have sitting on my desktop will be unfinished for a while. It's not a bad entry as entries go, perhaps a tad heavy on the sarcasm. But today another little one lost her battle with the dreadful liver disease that haunted Annika's first year of life. A transplant came for this little girl, but she was just too sick to make it through the grueling surgery.
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I didn't know this little girl at all, but followed her progress through her mom's updates on her website, and through our on-line support group. I didn't know her at all, but I knew that feeling her parents had every time they posted that she was getting sicker. I didn't know her at all, but it was plain to see that her parents loved her with all their might and I knew that feeling, too. I didn't know her at all, and now I will never have the chance to.

And her parents have gone to a place I know nothing of, either. That place you live when someone you have loved and cared for and fought for so hard is no longer there for you to hold and hug and whisper to in the dark night.

So tonight I cannot write about that stuff I was going to write about. That stuff not even worth mentioning right now. All my little complaints are just signs that life is continuing on here, in all its sometimes maddening glory. And I hate that her parents will never have a chance to complain about how hard it is to get a toddler to do _________ (fill in the blank, the possibilities are endless).

A few hours after reading the sad news, I was rocking Frankie to sleep and perusing my usual blog reading. On the incredibly popular and highly addictive dooce.com, the entry today found Heather bemoaning her daughter's blood draw, not a regular part of her daughter's life. And there was that part of me shaking my head and saying, "Geez, a lousy blood draw. Is that really so terrible?" And then two seconds later I was kicking myself, and picturing Heather, dooce's author, flipping me off for my judgmental thoughts, as I'm sure she would very well do had she been privvy to them. If we aren't doing our damnedest to help our children avoid suffering, and hating it with every fiber of our being when we can't keep them from pain, no matter how large or small, well then we just aren't doing our jobs as parents. That's what we do.

But still. Today a little one who had to struggle so hard for every single day lost her struggle, and the enormity of that fact dwarfs anything else I might have to say today. Maybe tomorrow, maybe the next day... But tonight is not the night.

Down

2005-02-16T17:12:00.000-06:00

It’s here again
the morning
I rise
bleary eyed, never fully rested,
nightmares of bleeds echoed through my night

But there she is
in her curly, red, bed-head,
a sandy-eyed smile
“Is it morning yet?”
yes, morning, it’s here
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As the coffee brews
my eyes scan the sea of plastic bottles
order and amounts etched in my mind

But still,
I check the schedule
perfection on paper
it calls out it’s orders
screams at me hourly
for checkmarks

The negotiations begin
please, please open your mouth
here is a chaser of juice, ice cream, popscicle, whatever
as long as it goes down

And it does…
only fourteen more times
fourteen more battles to fight today
so that I get my beloved check mark
on my beloved, perfect, anal-retentive chart

The IV pole stands tall and stares at me
and the pumps
they need me to push their buttons
to feed them tubing
they are always hungry

more negotiations
please sit still
it’s just for an hour or so
every day
for a while

here, here,
here’s your favorite TV show, video tape, computer game, whatever
to help you
to distract you from the tubing
that is attached to you
it’s only 100 more days, 99 more days, 98 more days
count down

9 a.m. “Mom? Is the mail here yet?”
10 a.m. “Mom? Is the mail here yet?”
11 a.m. “Mom? Is the mail here yet?”
“No, the red flags are still up honey”

I shudder to think
that today is the day the cards stop coming
just a few straggle in now
belated well wishes
the highlight of our bubble-like existence
the walk to the mailbox

There are none today
my fears confirmed
she cries
my heart breaks

I check the other “box”
“You’ve got mail!”
79 e-mails begging me to buy Viagra, Vicodin or Valium
the other 12 asking if I need a larger male part
even though I don’t have one.
not even one email that matters

I’m down today
I know this will pass
but it’s lonely here
in isolation

I should be grateful
her health
THE GIFT
the donor family
I’m not allowed to be down
it’s blasphemous really
how could I?

The whirlpool of emotions
suddenly, insistently, interrupted
beep, beep, beep
“Mom, my pump is done!”

Yes, it’s done
and so is my pity party
buttons pushed
checkmarks marked
negotiations over

A minute of my own
worry makes me hungry
now the search
cookies? chocolate? candy?
left over from Christmas?
I don’t care!
it makes me feel better
for that minute, for that second
there isn’t enough
two bite-size Mr. Goodbars don’t fix my craving

I could eat a mountain of chocolate
when I’m down

-Mika
February 17, 2005

King Noah

2005-02-15T03:09:00.000-06:00

I have always been amazed at Noah’s ability to care for others. He has always shown concern and compassion for those around him.
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When his school recently began a contest to raise money for a local charity, I knew he would want to help others and would participate in the contest.

Each child was supposed to collect money over the course of a few weeks. Each cent raised would count as a vote. The boy/girl with the most votes would be crowned King/Queen.

I made Noah a little bucket with his pic and a brief explanation of the contest. He was so cute when people would put money in it. He would sign “more” and really like the dollar bills better the coins!

Noah ended up raising $73.86 and was crowned King of the elementary division! He was sooo proud of himself!

And I am too!

.

Letter to Noah

2005-02-14T02:04:00.000-06:00

Moreena had a great idea after reading my post entitled "What do you call a person with a disability." Her suggestion was to write a letter to Noah about how I may address this very subject. My letter to Noah is below.
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My Noahie,

As your Mama, one of my jobs has always been to protect you. But as you grow older, it will get harder and harder for me to protect you from some things. I know you have noticed that you're special and different from others. Sometimes, other people may say mean things to you or make fun of you because you're different. I know this hurts your feelings, it hurts mine too.

You just have to not listen to them. They’re just jealous because they are not as special as you. When someone is mean to you, remember the good things about your self. Remember how smart you are and how much sign language you know and how you’re brave enough to ride the big roller coasters. Remember how many people in our community love you and pray for you and have showed you their support time and time again. Remember that your whole entire family loves you so much and we are so proud and lucky to have you in our family and lives!

I know you have seen me handing out the brochures we made about cerebral palsy before. I believe that sometimes when people stare or make comments - it’s not always because they are trying to be mean. They may just be uneducated, meaning they don’t know very much about cerebral palsy. So sometimes we may have to tell them a little bit about cerebral palsy and teach them that you’re not that different from everyone else!

You know how when Mama is sad sometimes she reads things that make her feel better? Well, the chorus of this song we hear on the radio sometimes makes Mama think of you. When you are sad, think of the words…..

“Don't laugh at me,
Don't call me names.
Don't get your pleasure from my pain,
In God's eyes we're all the same,
Someday we'll all have perfect wings.”

You’re so special baby boy, don’t you ever forget it!

Love,

Mama

A Mother's Instinct

2005-02-09T09:21:00.000-06:00

What do you do when a doctor won’t listen to you when you tell them your child is sick and is dying right before your eyes?
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Sitting in that hospital room, watching Anthony throw up every feeding we tried (whether by bottle, breast or NG), I knew something was wrong.From the minute he was born, Anthony has always kept down every ounce of breast milk or formula we gave him.He could finish a feeding and be tossed in the air…never would he spit up.So watching him that day, I knew something was wrong.No fever, no pain, no ascites (the rare occasion!), no cold, no pneumonia (we had JUST gotten rid of that!), nothing.He would just spit up the second he swallowed anything.My mom and I exchanged looks: This is NOT our Anthony.

In walks the doctor, not our regular GI but the one filling in that day.She looks at Anthony, looks at his chart, and says, “We are not treating this child for anything.He must go outpatient.”The arguments started, with me telling her that if she would just have someone contact the insurance, they would allow Anthony to stay inpatient.“I am not willing to do that,” says she.But my baby is sick!He’s throwing up!And this is her response: “Are you a doctor? No!You are just his mother.You could not possibly know that something is wrong!”And why did I not kill her at that moment?I don’t know.But I did tell her that we would be in the ICU before twelve hours was up.So, outpatient we go at 4:00 in the afternoon.

That night, at our apartment less than a block from the hospital, Anthony resumes the throwing up.Along with that came a dirty diaper.This happened about every 30 minutes, whether we fed Anthony or not.Then it came every 10 minutes.Finally, when he was throwing up and pooping every FIVE minutes, I called the hospital.

“Bring him in immediately” was their response.It’s –13 degrees outside.We pack up everything we might need in the stroller, put about 100 layers of clothes and blankets on Anthony and off we go.It’s midnight.

Once we get to the Treatment Center at the hospital, a very incompetent resident asks a million inane questions, we go through the “Why we are Here” spiel, and then are whisked off to the ICU.Anthony is asleep in his bed.My mom and I are resting in chairs.It’s 3:00 in the morning.I am fuming.

The next morning, our regular GI is back, and he has some bad news.“Anthony’s liver has shut down.We need to put him at Status One, and hope that he gets his new liver.If your husband wants to be the donor, he needs to get here NOW.”Huh.Really.You mean, my child is sick?I didn’t know that!

One day later, my husband’s liver saves my son’s life and I have filed a complaint against this other GI.We were told that if the team had waited one more day, Anthony wouldn’t have made it.His liver was digesting itself, and he was passing pieces of liver in every stool.His body was shutting itself down.His kidneys almost failed.His heart was straining to beat.His lungs had almost filled with fluid.And the new liver? Produced bile immediately.The kidneys popped back to life, his heart pumped and beat like it should, the fluid disappeared, and I had a pink baby!

A mother's instinct is strong. I wish more doctors would listen to it.

What do you call someone with a disability?

2005-02-09T01:51:00.000-06:00

As children start school and begin mixing with other children, sometimes it is noticed, that one child is "different" from the others. Continue reading...He may be teased, made fun of, the last one picked to be on a team, and called names.

Historically, people with disabilities were viewed as hopeless children who grow to become hopeless adults, depending on someone else. In the olden days, a disabled child would typically be sent to an institution to be cared for. They were not seen as having a future and were treated poorly, teased, and made fun of!

Welcome to the new millenium! Time are changing and nearly 49 million people living in the US having some form of a disability (that's 1 out of 5, folks) So obviously the stereotypes are myths, because these people do have a future and they do have feelings!

They are not retarded, dumb, cripple, mute, or defective. They are people just like you and me. They are just different!

So, you ask what do you call an individual with a disability?? You call them women, men, boys, girls, students, your teacher, doctor, neighbor, friend, athelete, brunettes, blondes, southerners, Texans, members, leaders, your Mom, your sister or brother, or and any other word you would call a person.

I call him Noah.

Amazing

2005-02-08T13:19:00.000-06:00

In the pregnancy book I pored over every night while we waited for Annika's arrival, there was a chapter called "When There's a Problem." The author recommended not reading the chapter if all was going well, lest my hormone-addled brain be filled with unnecessary worry.
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Of course I read it anyway. But most of the parenting and pregnancy magazines stuck closely to the picture we had mentally painted ourselves, in which the sleepless nights with a newborn were going to be our biggest hurdle.

When Annika was born, we believed that she was perfectly healthy for exactly four weeks. And then, in the span of a short 10 days, we were forced to readjust our idea of family life as we handed Annika off to surgeons for the first time. That jump from living life as we read about it in a magazine to the forbidden chapter left us, and most families I've spoken to about that time, feeling incredibly isolated. But most of us eventually turn to a local or on-line support group, and soon realize that, just because we didn't read about kids like ours in the pages of most of those magazines, they are out there, and they are really some amazing kids.

And we also come to know that there are also other parents/brothers/sisters who understand the despair of the low times and the joys of the good times. Parents of kids with major "issues" are among the most cautious people about saying "I understand what you're going through..." to anyone, because they have seen that loss and sorrow come in millions of shades, each heartbreak uniquely distinguished by the individuality of the family members involved.

When we were first discussing transplant with a surgeon (not the one who eventually did her transplant), we asked about quality of life for her after she was transplanted. He brushed the question aside, literally waving his hands as if to shoo such petty concerns aside, "Normal life! Perfectly normal!" And that was the end of the discussion for him. I can only say, Thank God for support groups. Talk about not understanding the dynamics of life post-transplant. I guess I have heard of a few kids who received their liver, and then went on to live life as if they had just been to the dentist to have a few fillings in; they seem almost mythical creatures. I mean, even under the best of circumstances, they are usually still taking some pretty hard-core drugs that mean normal childhood illnesses can lead to some really nail-biting times.

I can't say that Anni's life is not "normal," whatever that means anyway. Normal is one of those terribly relative terms. I do know that not many of her classmates at preschool doctor-play includes placing NG-tubes, I.V.'s, or holding still for a gas mask. I doubt that many of them have burst into tears while playing at the sudden thought of returning to the hospital. I doubt that many of them will turn into teenagers, sullen at their parents for insisting that she takes her med's 5 times a day (will there be fewer then, finally?) with all their unpleasant side-effects. I wonder if any of them are as worried about death as she is now, at age 4.

But I'm not so naive that I don't know that it could be much harder, or that all kids have their own worrisome moments that give their parents pause. Instead of wondering about "normal life," with all its unpleasantly sticky associations, I prefer to note that Annika has an extremely happy life. In the end I think this is a much better way to think of our kids' lives, rather than how many standard deviations we are away from some mid-line value on somebody's quality of life scale.

Nonetheless, we all have our low moments, when it feels so unfair to see our kids go through whatever particular hard time they are facing. And then the support groups can be invaluable, because sometimes you just need to vent and hear back from someone, "Yes, that just completely sucks." And not just from anyone, but from someone who really knows just how much it really does suck. But sometimes, the best part of the support group is hearing the stories of the kids themselves.

At my particular support group, C.L.A.S.S., it's been a rough week. So many of the kids are sick, and some of them have just been through nightmarishly harrowing experiences--brain bleeds, transplants that failed spectacularly, perforated bowels, esophageal bleeds, bacterial infections. And suddenly you find yourself logging on obsessively, but warily, worried that some fresh bit of bad news is waiting. But then you read something one of the kids has said or done, and you can't imagine living your life any other way--it is just that fantastic. One of the moms wrote about her daughter's brain bleed on her Caring Bridge page, the Feb. 6, 2005 entry. It's worth clicking over and reading the whole thing, but my favorite part was Haley's response to the neurosurgeon who warned that her sense of touch might be lost with another bleed: "As long as it's not my fashion sense!" And soon after absorbing all the bad news, she was thinking of developing a website to send hats to kids who have lost their hair (her hospital tip? "Never let a neurosurgeon cut your hair.").

Everyday our kids do and say amazing stuff, and even when times are the worst. So my question to you all is this: Do you have a story to tell about a bad time that found you looking in amazement at that little wonder, your own child? It doesn't have to be a dramatic event like Haley's. There are lots of challenges every day that our kids face, giving them the opportunity to wow us with their responses. Write it up! I'd love to hear about it.

A mommy's poem ( part I and part II)

2005-02-08T06:41:00.000-06:00

Part 1

When he was born his skin was soft and pink.
I held him in my arms but never to think.
The days that lay ahead weren't what I planned,
They told me he was dying and had but one chance.
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They said if he were to get a call, a special gift,
He would live the life we’d always wished.
The months went by and I watched him fail
On my knees I began to wail !!

This little angel giggled through the day
I was so grateful he never felt our pain.
The days were worse he began to suffer.
His days were hard but the nights were rougher.
His skin once pink had now turned yellow
I won’t forget the nights that followed.

A mommy’s worst fears were coming true
He was dying in my arms and nothing I could do.
When my baby became so close to death,
I know he felt the angel’s breath.
My special son so close to Heaven
Now the phone rings and hope has risen!

A child has died but gave us a gift,
My son will now know what it is like to live.

***Dedicated to Aiden’s donor family. Thank you for my son.

Part II (written after his transplant and after the struggles)

His little legs run as fast as they can carry.
"OH MOMMY! Come see a bug so hairy!"
He sings his songs and knows his numbers
He laughs and giggles; quite the performer.

The sick days are few, the good days are here
What was that feeling? Wasn’t it fear?
Pain and sadness were my old friends
But I won’t visit them, ever again!

I spend my days learning to talk
To doggies, fishies and all that walks.
I have learned more lessons than I ever thought could
Who’d figured my teacher was 2 years old.

Faith in God and family and friends
A gift I was given time and again.

"Now chase me Mommy lets watch YOU run!"
Words I prayed for, for so long.
Once was a time where it was not so good
When all my time on Earth just stood.
But my secret I will keep from him,
It is not his problem or burden.
I want no pain for him to bear.
Let him play and have no cares.

I dreamt of a healthy little boy
And God gave me, my child, my joy.
I have to learn to keep up with him
Before I know it the race he’ll win.

"Run Faster Mommy! C’mon Let’s GO!
Clap you hands, dance and laugh like so."
Some family out there chose to give,
Dreams came true, I watch him love to live.

Being Noah's Mom

2005-02-07T23:31:00.000-06:00

If you had asked me 10 years ago, where I would be today, I never would guessed that I would be where I am. I didn't realize then that God's plans for my life were very different from my own. While God was creating plans, I was dreaming of big things - being a singer in a show on a Broadway, a penthouse apartment in NY, taking trips to Paris, I wanted it all!
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I don't sing on Broadway - I sing to the most precious (and spoiled) 8 year old, my son - Noah. I don't live in a penthouse apartment, but a house with a wheelchair ramp. And I've never been to Paris - but I have been to Disney World and countless other theme parks! But, funny thing is - I think I might have it all.

I was never prepared to be the parent of a child with special needs, but when Noah's diagnosis came, I faced it head on, as I usually do with things in my life. Noah has cerebral palsy and epilepsy. It's hard to believe that one diagnosis - 5 minutes in our lives - would change the course of our lives totally. But it has.

It's taken me down a different road, a different path, on a trip I never dreamed of! And at times the road is bumpy, but with my family, friends, and God, we make it through!

Sure, there are days I wish I was shopping in Paris or singing on a stage but when I look at Noah and he smiles back with that huge grin, those big eyes, and that incredible, unconditional love, I know I am right where I am supposed to be!

Not Your Everyday Miracle

2005-02-07T16:50:00.000-06:00

Our first guest essay is from Robyn H.

On the night Emma was born, I read an Anne Lamott story called “Barn Raising” about a family dealing with their daughter’s illness. I read this excellent, heart-breaking story and then I said a prayer, “Thank you God for my family. Thank you for another healthy baby. Thank you for knowing there is no way I could handle an illness like cystic fibrosis. Amen!”

If my life was a movie, right then there would have been the kind of music that tells the audience that this is foreshadowing.
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“Does she seem a little jaundiced?” I ask Phil and the nurses. No, not really they say. But the young nursing assistant who weighs her that night, says “yes” she does indeed seem a little jaundiced.

Love Your Liver- A Workbook for Children

I get this workbook with a smiling cartoon liver to help Jake understand what is wrong with his sister. It answers some of his questions:
Jake: “Why does Emma have a special tube for food?”
Workbook: "The liver helps your body digest food.”
But not others:
Jake: “What does God’s liver look like?”
Workbook: (nothing)
Jake: “Why did God make Emma sick?”
Workbook: (nothing)

I think of the workbook when I explain things to friends:
“So why does Emma have blood in her diaper?” asks curious friend.
I answer, “Well the liver has many functions,” (“over 500 jobs to do” page 6) “and one of them is to help with clotting” (The liver helps stop cuts from bleeding”, page 9).
“So how are you doing?” asks curious friend (the workbook has nothing).

Welcome to California

The night Emma and I left Phoenix Children’s Hospital to go to UCLA and wait for a new liver, our nurses, patient care tech’s and favorite housekeepers all came in to chat and joke and say goodbye. In all the confusion, I still don’t know which nurse was assigned to us that night. When we left with the transport guys, the staff lined up in the hall to wave goodbye.

A medical flight takes us to UCLA. We are taken to our room on the pediatric floor. It’s midnight. A patient and mom are in the window bed, the good bed. The pretty but serious nurse comes in (I’ll call her “Nurse”). The sleepy resident follows. Nurse does Emma’s physical assessment and hands me the admitting form. She asks questions and when my answers don’t meet her approval, she glances over at the yawning resident and arches an eyebrow or two. There may have been eye rolling. The resident finishes up and leaves.

“Do you have her TPN ready?” I ask.

TPN is IV nutrition, total parenteral nutrition. Emma’s liver failure has progressed to the point that she only takes two ounces of horrible formula each day by mouth, and the rest of nutrients through a tube in her chest. My hospital faxed the orders over, twice.

“No, we’ll just run fluids in the morning,” says Nurse

Nurse shows me the call button, the bathroom we are not allowed to use and the tiny closet for my things. There are no phone calls after 9 pm. She shows me the chair bed, “But,” she says, “there really isn’t enough room in here for it.”

At this point I say, “Hey, maybe you’d feel better if I just took off. I’ll be on the next flight back to Phoenix. Take good care of my dying baby, ok?”

Actually I said nothing. She looks at me for a long time, and then sighs, “I guess we can put it in front of the bathroom, since you won’t be using that anyway..”

The chair bed is positioned so that every time the door to the room opens, the bright light from the hallway assaults me. I can’t turn in any direction to avoid it.

Emma starts to fuss. I ring for Nurse.

“Can I have one ounce of alimentum, warmed up a bit, please?”

“The doctor has written NPO,” she tells me.

NPO means nothing by mouth. I know when I am being tested. Sometimes a doctor or (usually) a nurse will use some medical acronym or polysyllabic term to see if I’ll ask them to please, for the love of God, enlighten me with your wisdom and tell me what that means. I never blink. I know the lingo.

“Can you ask him again,” I plead, “she needs it to get to sleep.”

She leaves. I bring the now frantic Emma into the chair-bed with me. There are many problems with liver failure. Since she is 9 months old, she cannot tell me if she is having the headaches or body pain. Sleeping next to me sometimes soothes her. Nurse comes back, too quickly to have asked the resident.

“Sorry, it’s hospital policy, she can’t sleep with you. And the doctor says no formula.”

“Well then, “ I clench my jaw to keep my voice from breaking like it does when I’m angry, “she’ll just scream herself to sleep.”

“What about a pacifier?”

“She hates them, she sucks her thumb.”

Nurse leaves and comes back with a pacifier.

“It’s vanilla flavored.”

“She will spit it at you.”

I wished I could spit at her too. Nurse leaves.

I lay Emma in her bed. She howls for 10 minutes. I leave and get a cup of ice water at the machine down the hall... Standing at her bedside, glancing furtively over my shoulder, I feed her tiny chips of ice. She sucks greedily at my fingers. Someone comes into the dark room, I stand still. Emma whimpers and smacks her lips for more. The person leaves, I resume the illicit feeding. Once she settles down, I lie on the chair-bed and cry and pray myself to sleep.

I am asleep for an hour when blinding hall light awakens me. Nurse shakes my shoulder, “Just so you know there are pay-phones down the hall.”

I roll over, my face to the light in the hall, my back to Nurse. She leaves. This exchange wakes up Emma. I give her more of the secret ice chips. We fall asleep and I have one of those dreams that don’t feel like dreams. The other moms on the floor come into my room.

“Can we talk to you?” they ask, “We hear you’ve had a problem with Nurse. You know she’s really a lovely person, California nurse of the year. You’ve hurt her with your rudeness. Could you just try and be nice?”

I try to defend myself, “Everyone at our own hospital loved us, loved me. We were no trouble at all. They lined the halls to wish us well…”

The other moms smile sadly and shake their heads.

I wake up early. Someone is in the room. She whispers. Whispers! A great nurse is one who whispers when there are sleeping parties present. She is Maria. Emma stirs. Would I like her to hold Emma while I take a shower and get breakfast? The night is over , Nurse is gone.

Later that day the silent roommate is discharged and I get the window bed. We get a new roommate. Jade had her transplant four months before, she is here for a blip in her liver numbers. Her mother, Diana, is beautiful and funny. Our nurses are good, great even. Doctors, social workers, transplant coordinators visit our room. We laugh about everything.

A Picture’s Worth

You should see the pictures from that day. The first one I would show you is just her- sullen, swollen cheeks (jowl’s one nurse called them), dull, yellow eyes and skin shiny and orange. Not just jaundiced but Tropicana orange. “Is something wrong with the camera?” you would ask. And I would give you the second picture. She is sitting on a nurse’s lap, same baby, but now you would see the contrast. The pale blonde nurse and Emma. And you’d gasp. Maybe I’d point out the little blood marks all over her face where she scratched herself raw.

On Sunday morning Phil, Jake and I went to the Santa Monica Pier. There wasn’t much to do in the ICU, especially for a 5-year-old. The guys were driving to Phoenix that afternoon. So we went to the beach.

I could show you those pictures too. Standing and smiling in front of the Pacific Ocean. Me smiling too much for Jake in the picture he takes of me at the end of the pier. Phil won Jake a big floppy yellow dog at the amusement park. “It’s the color of your sister,” we helplessly tease. We had gotten good at this kind of joke, calling Emma our “little golden girl”. In these pictures it looks like we want to shout, “WE ARE A VERY HAPPY FAMILY!!”

There is no picture of Phil getting the ok from his boss to stay one more day. Likewise, there’s no picture of the surprise on our faces when the resident asks us when we come up to the ICU, “if the surgeon had been to see us yet…maybe there’s a liver for Emma.”

If we had used our camera, we could fill a photo album with pictures of what happened next. Maybe video would be better. The flurry and hurry and waiting. Finding someone to keep Jake. The residents, fellows and attendings that come to tell us, maybe it is true, maybe there was a liver for Emma. Phil on the 405 after dropping off Jake with a friend. (Almost certainly best not to have evidence of the laws broken and tears shed just trying to get back to us on that stagnant freeway).

There are no pictures of Emma vomiting bright red blood all over me as we waited that afternoon. Probably better that way. Who needs to see it? The shock in my face as I pray this liver can’t be a false alarm, please God I can’t take this. Nurses and residents scurrying around. One puts his arm around my shoulders. And Emma vomits again. Yes, better that we have no pictures of that.

And nothing of a mourning donor family, spirits weary, who say “give” on this, their most awful day.

The next pictures would have been boring. Phone calls made, hugs shared, prayers said. People saying “congratulations” like we won the lottery. Dinner was good (Thai basil noodles), but hardly worth the film. The line of people across the street from the restaurant waiting to see “the Matrix”. People walking around like it was just Sunday night.

You might smile politely at the next ones. Emma feeling suddenly good for no apparent reason as they take her to the Operating Room at (finally!) 3 am. Us sleeping fitfully on makeshift beds on chairs in the waiting room/ lobby/entrance hall. The young Japanese in the chairs across from us. Their incessant happy patter giving me white noise to sleep by. Their heavily accented English calling our name as the lobby phone rings with news from the OR. More nonexistent snapshots of:

the first call- the old (dirty, scarred, cirrhotic) liver is out
the second call- the new (pink, lovely) liver is in
the third call – she is being sewn up, the surgeon will be out to see us shortly.

We surely do not have pictures of what came next. A pale (!!) yellow baby in a bed in the ICU. Tubes aplenty. Or a picture of what I saw that night. I’m leaving, it’s late, I need to see Phil and Jake now. Emma is asleep, monitored, intubated. I lean in, her eye flashes open for one microsecond. I see white. I am floating above the ground, a magical picture. No, a trick of the camera you would say.

Those pictures I mentioned? The charge nurse took those in the ICU that morning, because it was Mother’s Day. I’m not in the pictures because I’m at the beach. They are our favorite pictures now.

paranoia, justified

2005-02-05T21:17:00.000-06:00

It can be hard to relax when you have a child with major medical issues. Even something as innocuous as a trip to the grocery store can be nerve-wracking at this time of the year, as I try to steer the grocery cart out of the path of every sneezer, cougher, and sniffler walking the aisles with us. I remember my own days of thinking nothing of going out in public with a cold, so I understand why those walking germ factories are rubbing elbows with us, but, as the parent of an immunocompromised child, I have to say it drives me nuts.
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Even safely ensconced in our own home, with the faint whiff of bleach cleaner in the air as testament to the daily anti-germ campaign, I find things to set off new worries. For example, there's our nightly ritual of unwinding with a cup of herbal tea on the couch, watching some bad show on TV. When I was in the hospital with Annika, Joerg used to call me a masochist for watching ER. He was right, really. What's the entertainment value when the issues being dramatized are poised to become your next new paranoid worry? Recently, I switched channels to watch the season premiere of Medical Investigation. The opening scene showed a baby dying as doctors worked frantically over its tiny body. "OK, that's it for me. Good night!" And with that Joerg was out of there so fast I didn't even have time to respond. But I stayed on to the bitter end, masochist that I am. At one point, the doctors thought that the babies were dying from some vicious strain of bacteria. Half of the final list was bacteria that Annika had been infected with pre-transplant. Now, why in the world would I keep watching to see if the babies would win their battle with the bacteria, just to remind myself how narrowly the battle was won in Annika's case? In the end, it turned out that the infections were actually viral, anyway, but it was still a weird sort of freak-out moment when I recognized all the names and acronyms being thrown out, and mentally added my own favorite bacteria, as well as shouting out suggestions of alternative antibiotic therapies for the "doctors" to try. So I really shouldn't watch these shows, but somehow I just can't break free from their tractor beam. Also, I really shouldn't watch Medical Investigation because, geez, the writing is terrible, and all that eye rolling might be making me more near-sighted.

And it's not just TV. We are also magazine junkies. The New Yorker and The Atlantic Monthly are my usual fixes, and some issues are chock full of articles that get my worry gene going. Last month, The New Yorker ran an article, The Pediatric Gap, discussing the abysmal lack of pediatric testing of drugs commonly given to children. The problem is that drugs may act completely differently on young patients than they do on adults, due to major differences in the way that an immature system deals with the drug. And yet very few of these drugs are actually tested on kids before being released for general use, leading to some very scary outcomes, even in generally healthy kids. Of course, reading the article, I was ticking off the number of drugs mentioned as potentially dangerous for kids that Annika had had in her four short years. The grand total was 5, including 2 sedatives that she had just been given in the two preceding days. And the drugs listed in the article were not those that we had been told might be dangerous for her, and there were certainly plenty that we were warned could have serious, adverse side-effects. The quotable quote from the article is from Maureen Strafford, a Boston pediatric anesthesiologist and cardiologist, “It’s what I call the reverse lifeboat phenomenon...In medicine, children come last.”

In general, I would say that Dr. Strafford's quote is bit too general (perhaps there was more context that was not included in the article?). We have found that, for healthcare personnel anyway, children often come first. But this is evidently not the case in the world of pharmaceutical companies and medical equipment manufacturers. The image of pharmaceutical companies has taken quite a hit recently in the media. And it's not just the serious news reporting on massive drug company profits while prescription drug costs pauperize many elderly patients. E.R. (my personal barometer for medical issues) recently featured an episode in which the drug companies were essentially serving as corporate johns to doctors who were paid to prescribe the company’s expensive drugs, without mentioning possibly nasty side-effects (leading to the patient's loss of a transplanted kidney--oh, the vast array of scenarios to keep me awake at night).

Yet I found myself sympathizing a bit with the pharmaceutical bad guys because of this article, Don't Do the Math a few weeks later, pointing out that companies are often better off not doing risk analysis when it comes to jury damage awards. James Surowiecki
interviewed Harvard law professor W. Kip Viscusi, "[who] has shown that people are inclined to award heftier punitive damages against a company that had performed a risk analysis before selling a product than a company that didn’t bother to. Even if the company puts a very high value on each life, the fact that it has weighed costs against benefits is, in itself, reprehensible." Of course, one would wish that companies would simply make better decisions when it comes to interpreting risk-benefit ratios. But it also seems that the article conflates two different ideas of "benefit." In the G.M. case, in which engineers figured the dollar cost of moving the gas tank versus the dollar cost projected for settling wrongful death lawsuits, the benefit was quite baldly company profit. In the recent case of Vioxx, the benefit-risk analysis counts as "benefit" a significant improvement in the quality of life for patients. But, yes, company profits must be in that calculation somewhere as a benefit as well.

If simple risk-benefit analysis can be so damning overall, just imagine how hard companies would get hit if there were the vaguest hint of knowing that children were at risk. The path of blissful ignorance becomes much more understandable.

There is so much good in our system of healthcare, but so much that just so plainly needs to be fixed. The question is, can it be fixed in a way that does not permanently hobble the parts that make our healthcare so effective?

While not contemplating how to fix the entire healthcare system in our country, I think I need to at least stop watching any TV show that has characters shouting "Stat!" at one another.

Yesternight, A Poem for Drew

2005-02-05T11:17:00.000-06:00

____________________

The night before this was yesternight,
or so it was named by Drew.
A red-haired sprite, feisty as fire and just the whisper of two.
She came to this earth to let us know,
never forget to go, go, go.
and "Never... never... never..." stop.
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Save one thing...
smell the flowers, the showers bring.
Always stop. Always smell,
and don't forget to water well.

"I don't! I won't!" I wonder still,
how one so small keeps such strong will.
Every hour and every day,
she battles and bursts to get her way.

As the night hour falls,
one might think,
she'd tire and wilt, wee shoulders slink,
yet the battle endures.

Yelling loudly and louder at the sandy man,
singing "twinkle you stars" and "shine if you can."
Demanding and standing,
defiant to sleep...

Finally... at last.....
to dream land she goes,
from cloud to cloud,
over rivers of rainbows.

Rocked by the moon,
tucked into the sky,
peace at last,
nighty-night, Butterfly.

Quiet, gently tip toes in,
fearing to wake, to begin again.
Her eyes now shut, a soft repose.
But even at rest, she grows, she glows.

In my prayers are praises,
for her fight and fire.
God's gift to Drew,
to live, to inspire

Shine little one,
Fight the fight.
All and every day,
and yesternight.

-Mika Denny
July 9, 2002

Advice on posting

2005-02-05T09:31:00.000-06:00

Your posts can be about any aspect of your day-to-day living, or your thoughts on news or magazine articles you have read. If possible, it’s nice to include a link to the article you are responding to. If you have any questions about adding links, pictures, or formatting your entry, please email them to me, along with your post.

I recommend writing your post in a text editor and saving it to your computer’s hard drive, rather than writing the post directly in the blogger window. Blogger has been known to eat posts, or you may accidentally hit the wrong button in the process of posting. If you’ve saved it on your computer, you won’t lose all your hard work. Once you’ve written your post, you can then just copy and paste it into the blogger post window. Remember that you can preview your entry before posting it, and if you see any problems (like formatting not appearing correctly, for instance), just contact me.

About this blog

2005-01-26T20:08:00.000-06:00

Postcards from Holland is a group blog for families of children with chronic or life-threatening illnesses, or any physical or mental disability, and those that have lost children.
It was conceived as a creative and therapeutic outlet for parents to express their thoughts on
living a family life different than the one we all envisioned. Writing is a wonderful way of
working your way through the challenges of the medically-obsessed or therapy-driven life, as well as celebrating the successes.
Contact me (moreena@gmail.com) if you would like to join as a regular poster,
or contribute a guest essay.