When your baby is diagnosed with a brain tumor in the posterior fossa of their brain, they tell you all the surgical risks. Some of them you can guess (paralysis, death, you know the top horrors) and others they fill you in on--balance issues and ataxia (a fancy word for the shakes). Some they never tell you: the need for shoes that fit special braces for their feet and ankles.
I know it might sound a bit silly to be bringing up something as specific and maybe trivial in your opinion as shoes. The thing is: shoes are sort of a big deal when you are a toddler to walk, a bigger deal when you need to wear dance shoes in your first dance class as a preschooler, a huge deal when you are the 5th grader who wants to wear flip flops and pretty much, one of the top three most important things when you are a teenage girl.
Shoes are no small matter.
Wayback in 2008, Lily was fitted for her first braces. I was resistant; it felt like another strike against her--something visible that showed her difference. But, she got them and those little "SureSteps" sure gave her the ankle and arch input and support she needed. The only problem: finding cute shoes to fit those braces in. Stride Rite saved the say then--we'd have to modify their shoes a bit to wedge her shoes in--taking out the insoles and always selecting the widest shoes they had. It was still slim pickings--we often did not have a choice of which shoe to get.
You get what you get, right?
Summer came and she wanted sandals. There weren't sandals that worked with braces. Another summer came and she wanted sandals, again. But, still sandals and braces just did not work together.
I used to feel such bubbling rage and jealousy at little girls in all the shoes they wanted.
Dance began and the braces did not fit in tap shoes and where absolutely ridiculous in ballet shoes. She went with "nude-y" feet--braceless and free. Then, she added an additional brace to her daily ensemble--these "kiddie gates" that looked a little like soccer shin guards but acted to help her flick her toes up. We went wider with shoes--even less options for my kid.
And I know, I know, this is just shoes. But, when your child is diagnosed with something like a brain tumor--which unleashes it tentacles and influence on every part of your life, every single solidarity thing is crushed or cracked or tainted or bent. People always assume that we don't "sweat the small stuff," or "have bigger things to worry about," but life is all the small stuff and all the small things. Life adds up to feeling normal when you can wear the shoes everyone else is wearing.
In 2nd grade, Lily let go of the braces--saying farewell to those annoying passengers and hello to more shoes. But, still, we had to pick the best, most supportive shoes we could find (And still, it was Stride Rite to the rescue!)
In 5th grade, Lily's summer PT goal was flip flops. Her PT was not totally on board; but Lily only went to those weekly sessions at CHOP because she wanted to wear flip flops. And then, she could flip flop everywhere. It would take a couple summers before she started losing a flip flop in the course of the walk from the pool to the car; but she did it. Then the goal became high heels--first wedge sandals and then in 8th grade, character shoes for musical theater.
She walked all around the house and up and down the stairs and practiced all her turns and backwards walking and sideways walking in those shoes. And then she danced.
I held my breath when I saw her first recital in character shoes. But, she was fine. She put the work in for the shoes. Tonight, she had brand-new black character shoes with a slightly higher heel than before. She had practiced in them; she put them on for the first time tonight.
Mike grabbed this picture:
That's her right in the middle, dancing like she born in those shoes.
It's a little thing, friend. But little things, little things, add up to big things like dancing and singing on stage and running a couple miles at practice and walking across the stage someday to get your diploma to walking into your first job. And those little things, those make up a life, a beautiful, beautiful life.
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