22q11.2 and A Magic Wand
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Guest post by Proud 22q Mom
December 3, 2014
I've decided to put a magic wand on my list for Santa this year. One that I could wave when I needed a bit of pixie dust, courage or faith that it would all turn out ok. One that I could keep handy in my pocket, as it seems I have been needing one an awful lot lately. I wouldn't use the wand for me, I promise.…I wish it were for me, as that would mean that I could transfer the worries and heartache, the challenges, deficits and health problems from my daughter to me, something I have been wishing for since she was but a tiny infant.
Today, for instance, I spent the morning trying to find a specialist who could look at her immune numbers and painful joints, because yesterday we discovered that among the 180 known complications from her tiny chromosomal deletion, she had checked off one more. Arthitis. Painful, joint-swelling, aching, arthritis. "Very unusual," according to the doctors, but an unfortunate complication of her already "unusual" 22q11.2 deletion and her exceptionally rare compromised immune system. Unfortunate in that the arthritis goes hand in hand with her psoriasis, another check on the list, another complication that is although unusual in children, nevertheless severe. An anomaly that causes her to use 4 steroids a day, to sit through light treatment 5 days a week, that has taken all the skin off of her heel and now started to tear at each and every nail, and has impacted 14 sites on her body. People who know her at school probably don't know that she took ten minutes to get on her socks today, trying to figure out a way to put on her socks that wouldn't touch the tips of her psioriatic toes or bend her ankle, swollen with arthritis. Ten minutes where I blinked as fast as I could to get the tears to stop betraying my smile for my little girl.
Today, I spent my afternoon trying to find a pediatric ear surgeon with availability to operate and consult on her rare cholesteatoma, a growth that is invading her perforated ear drum and causing painful ear drainage and unbeknownst to us, permanent hearing damage, little by little. The doctor yesterday, after explaining to the med student Nadia's ten page chart, told the med student that what he was seeing was "highly unusual, painful and potentially dangerous." I thought to myself, "Be strong, Anne." Be strong like Nadia, who is singing Frozen and joking about the doctor's beard with such glee that even the doctor found himself running his fingers through her hair, tucking her hair behind her ears, and finishing his consult with her on his lap. Most people we know don't know these things because we focus on the other things-- the joy, her health, however temporary, and our incredible luck in having here with us despite enormous odds. Even Nadia would never say anything, because she is Nadia, and sadly, because she doesn't know any different.
You see, Nadia is the biggest fighter; the happiest soul; the toughest cookie. She wakes with a contagious smile after a night punctuated with pain. She giggles from her core during her long, drawn out doctor appointments at funny pictures she draws, happily taping them to the doctor's wall, ignoring our discussions of her bodies' failure to keep up with her enormous spirit. She used to use 10 sign language signs to make a joke after a frustrating, beleaguered hour of speech therapy, twinkling as she added each sign. She decorated her ankle braces with puffy pant and pretended that she was walking on the moon, singing as she strapped the velcro tightly and shoved it into her special shoes. She tries each math problem with renewed optimism, even after years of slippery slopes of learning and holes in her understanding the size ofTexas. Some days, after bringing home math work that is years above her grasp, she even says that it is her favorite subject because her teacher leaps across desks and she lights up, unwilling to see the bountiful dark corners of her limited number sense.
I think to myself, "Be like her." Every time I feel myself crumple a little. The same thought, "Be like her." Strong, joyful, living in each moment. But, every so often, when I'm reaching in my pocket for that wand and it isn't there, I know that sometimes, being like Nadia is also finding the words for her when she doesn't have them; finding the right path for her when others haven't had to travel her road. When I listened to the IEP meeting tonight, I heard a lot of things that made me so proud, made me feel so grateful. Her incredible, heaven-sent teacher that I swear is an angel on earth. Her speech therapist who has adopted Nadia as one of her own and made a world of difference. Our consultant who makes me feel like the future I want so badly for my daughter is within reach. I'm grateful for the thing they all have in common--hope. For Nadia. For her dreams. And selfishly, for my dreams for Nadia, the ones of her growing up and living happily ever after.
But, when I sat at the IEP tonight, I listened to the can'ts. I listened to the list of reasons why there isn't a curriculum, a modified plan, to fit my child's deficient math comprehension, her deficient working memory, her deficient sense of time, of money, of numbers and I listened carefully and began to realize something very important. I don't wish for others to have her deletion so that there is a clear path, or a well documented road. I just wish life was easier for her. That there was a wand. I listened to the can'ts and to the lists of what she is missing and it felt like a gigantic wave after my day of being washed against the tide of charts, surgeries and lists of odds, odds that although rare, define my child. And then I thought of something that someone so dear to me shared recently, a quote by Shel Silverstein, "Listen to the Musn't's child, Listen to the Don't's. Listen to the Shouldn't's, the Impossibles, the Won't's. Listen to the Never Haves, then Listen close to me. ANYthing can happen, child, ANYthing can Be." Somehow, today, that was just the ticket. For that, and for my bright shining star of a daughter, I am incredibly grateful.