|Tommy "Superman" & his mom Kim|
By: Kim Saumier
This world, my home, my heart...will never be as it was before.
My Thomas was a good boy, perfect in every way. He didn't know hatred or jealousy. Most people would say that he didn't "know" if he was being made fun of or stared at but I say he didn't care. He loved and accepted everyone with his whole heart. Can you just imagine for one second what a gift that is? I think that most of you would know Thomas for his smile and if you were lucky enough, paid close enough attention you could see that sparkle in his eyes because it was always there. And then for his laugh and giggles, he sounded like that boy from A Christmas Story, only 1,000 better-it was beautiful.
He is beautiful. He turned the hardest of men into mush, his grandfather's, my dad and Doug(his other grandfather) loved my baby so much and Thomas loved them back even more. It was amazing to see. Thomas went through so much from the time he was born, surgery after surgery, piles of medications, feeding tubes, machines, equipment and enough supplies to fill 3 houses, just ask my husband. This journey hasn't always been easy, but it has always been worth every ounce of everything we've ever gone through. Being a parent of a special needs baby, there are things that we have to go through that most parents will just never understand. I had Thomas when I was young he was a preemie 3lbs. 11oz. They found Hydrocephalus at his 2 month check up and Schizencephaly that same day. I can remember saying out loud for the first time to one of Tommy's therapists "...because he's not going to ever walk..." We were in mid conversation, I realized what had just come out of my mouth and just broke down. I think I cried for a week straight. I had the thought in my head but had never actually said the words. He started having seizures at 4 months old, he lost his ability to suck. Started PT at 5 months-we worked on sitting up-didn't happen-heartbreak. Crawling-just not there. We worked on standing-more heartbreak. We used a walker thinking he needed to be moving to find his balance-nope. We worked on keeping him stretched and range of motion-SDR then Tendon releases-more heartbreak. We worked on feeding, we surely weren't losing this too-gtube, nissen, pyloralplasty-devastation and despair....Through all of this there are also the lingering feelings of "he is never going to have a family, no mother-son dance, no babies for him, and for me. How will I do things, afford anything, get from here to there?
This is a long hard road but the rewards, the blessings, Thomas has given me are everlasting. What I have learned from my baby far outweigh all of that. I may not have seen it all of the time along the way and still get lost sometimes. He taught me that acceptance and giving up are worlds apart-this was the hardest to believe-but Thomas didn't give up on me because he is a fighter. He is perfect and pure and he healed my heart every time it broke. He made me strong, shows me true love, taught me patience...he makes me good and grateful and brave...Thomas was all of these things from the second he was born...He is my superman...
You've made my will strong
Taught me right from wrong
You've made my eyes open wide
An angel forever at my side
You've made my words kind
A love few will ever find
You've made my heart melt
A truer feeling never felt
You've made butterflies come and go
ALWAYS brave without the show
You've been everything to me
...and I want the world to see
The precious gifts you give
FOREVER in my heart shall live...
Tommy's condition is now frequently detected by ultrasound. Kim works with moms and dads through facebook, email and yahoo groups to encourage them to choose life for their unborn child diagnosed with schizencephaly. Then she provides support and encouragement to the families who do choose life. She is a wealth of medical, financial, emotional and parental knowledge and experience. I am honored to know Kim due to our daughter Vanessa who also has schizencephaly. Through Vanessa's diagnosis, I have discovered a group of moms with amazing strength, amazing character and amazing love....mom's like Patty, Laura, Shelley, Jessica, Joni, Sarah, Jena, Amanda, Loren, Misty, Shanon and 120ish more...all of us developing in ways we never expected and all of us at different places in the journey and encouraging one another. While we share frustrations, sorrows and grief, I have NEVER heard anyone in our group REGRET that they chose life for their child. Unfortunately, there are no pamphlets at the doctors' offices telling moms-to-be who just had an abnormal ultrasound...."No regrets."