Tuesday, July 26, 2005

School Supplies

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

Friday, July 08, 2005

Thoughts on Holland

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

Thursday, July 07, 2005

graduate work

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!

Tuesday, July 05, 2005

Something Else Please

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.

Monday, July 04, 2005

Is it really Holland?

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?