Monday, September 24, 2007

Exceeding Expectations!

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.

Tuesday, July 17, 2007

The rewrite

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.

Friday, May 18, 2007

Back and Forth

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.

Sunday, May 06, 2007

Can there be a balance between work and healthcare?

from Becca, at

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.

Monday, February 19, 2007


(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.

Thursday, January 04, 2007

mahalo, hawai'i

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.

Wednesday, November 29, 2006

true story, as heard at a presentation yesterday

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.

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...

Thursday, November 09, 2006

November is National Epilepsy Awareness Month!

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!

    Saturday, October 21, 2006


    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: 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?

    Tuesday, September 19, 2006

    I am

    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?

    Thursday, September 14, 2006

    docile i am not

    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.

    Wednesday, September 06, 2006

    End of Summer

    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

    Thursday, August 17, 2006

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

    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?