When my husband and I first got the Spina Bifida diagnosis for our baby, the overriding question in our minds was: Will our child walk? When we posed this question to Lilly’s doctors, they couldn’t answer us definitively. They could only say, “Time will tell.”
This respose enraged us.
At such an emotionally fragile time, we needed answers. And in this day and age, with all of our technology, couldn’t they tell us one way or another? Aren’t doctors gods?
Well, no, they’re not. They’re human beings who don’t want to give desperate parents false hope about mobility. They pointed to the low level of her lesion (L5-S1), and the fact that I could feel movement like kicking-it could be arms punching, but it could also be legs. These were “good signs.”
They were good signs. Yet we still wondered, still doubted, still feared. Visions of wheelchairs danced in my head.
A lot of that angst dissipated after Lilly was born. Those legs wouldn’t stop moving, especially when it was changing time. I didn’t complain. We called her “Kicking Bird.”
She got AFO’s (ankle-foot orthosis braces) when she was one and a half, tiny little purple things with butterflies. We borrowed a stander from Early Intervention, this weird-looking contraption we strapped her into, to get her standing and bearing weight. I was grateful for it, but also a little horrified by it. Lilly didn’t seem to mind; we wheeled her up to the front door so she could look outside and watch the world go by.
She got a shiny blue walker not long after. Here’s a few photos of her banging around in it:
We hauled this walker around everywhere we went for the next year or so. We thought maybe the next step would be lofstrand crutches, and began practicing with them near her third birthday, when Early Intervention would end. But on the very day of her third birthday party, Lilly astonished us all, and walked on her own.
I’ll never forget that glorious day. On that day, I thought I’d never have to worry about her walking again.
These days, Lilly walks independently, but we use her EZ-Rider stroller chair for long distances. She’s still content to let me push her around in it, but there will come a day when she won’t be. And although it’s still pretty easy for her to get around elementary school with her fairly light backpack, I think about my own middle school and high school days, lugging around 50lbs worth of books in my back pack, and know Lilly will never be able to do that.
Add to this her growing height and increasingly precarious balance. The girl trips over nothing. Not long ago, I got the dreaded phone call from the school nurse, informing me that Lilly had tripped going down some stairs, and hit her head pretty hard. She told me to look out for the warning signs of concussion. I had visions of her getting off the bus with bloody bumps and bruises on her head. Turns out she was fine, but these are the things I worry about these days: teeth knocked out or a broken skull.
At the very least, crutches may still be in her future, at least for safety’s sake. There may even be a wheelchair in the horizon. The idea doesn’t fill me with dread as it did seven years ago. Sadness still, maybe, but also a bit of relief in knowing that she will be safer that way, and able to get through her day without getting exhausted or plowed over by other students.
It’s not something we need to think about this moment, but probably sooner than we think. I expect resistance on Lilly’s part; it wouldn’t be Lilly if she didn’t resist!