Tuesday, August 5, 2014

A small heavy box

Maya got new splints yesterday. Splints? Braces? Orthotics? It doesn't much matter what you call them, they are shiny and new and Maya is Christmas-morning excited about them. They must feel good, the way they stabilize her unsteady ankles, because she is eager to put them on and proud to show them off.

Yesterday was a rush of a day . . . I picked her up early at school (which is where the splints had been delivered) to take her over to her first day of AAC camp (where I stayed and observed). After camp I rushed her home, where my pit crew (Dave and Will) were waiting on the sidewalk to make a trade: I released Maya to them, they gave me a sandwich and new vat of iced coffee, and then I hopped back in the car to drive to my night class. I didn't get to really look at the new splints until I arrived home after class, and as I opened the door and came into the apartment they were waiting to greet me on the countertop.

I picked them up and admired the straps, clean and white and new, though likely not for long. Soon the threads on the sides of the velcro will start to fray. The little white cushiony thing that prevents the strap from overtightening on her skin will become more progressively dull, then it will loosen, and then it will be lost (spoiler alert: they always get lost). The suede-y soft inner white cushion pads will stay soft, but lose some of the supple squishiness that they have this week. Newness aside, what struck me the most was the length: cut to extend a bit past her toes in the front, these seem huge! Are her feet really this big? Do these really fit Maya?

Maya's feet had been abnormally small for years, which we were told was a typical side effect of not being able to bear weight and stand and walk (which typically causes feet to spread and grow more rapidly). The sheer size of these splints seemed to say "look how far my feet have come, look how far I've come."

This morning I crept into Will's room, to the high shelf in his closet, and pulled down a small shoebox. If I could hand it to you, the shoebox would feel light enough that you would wonder if there was actually a pair of shoes in there . . . but in my hands, it is a heavy box. Small enough to hold with one hand, big enough to hold years of progress. Light enough to balance on a loaf of bread, heavy with the weight of our worries and wonders and yes-my-baby-wears-splints and she's-almost-three-and-no-not-walking-yet.

Made of light cardboard, strong enough to hold our past.

I remember every pair of splints in that box.

I remember the first pair. She was fitted for the first pair in a clinic, wiggling and unhappy and not at all interested . . . and I was hopeful and eager and thinking "maybe this will be the magic ticket!" Picking the bold pink straps . . . trying them on her at home, watching anxiously to notice a change. Not noticing a change. Keeping the faith. When she outgrew them, we took a little break, because it didn't seem like they mattered much anyway.

I remember the second pair. She was fitted at home and we poured over the choices in patterns. For my cow-obsessed girl, finding a pattern with barns and farm animals was perfect. These were a different type of splint, and I recognized cautious hope as it bubbled up in me . . . these might be the ones, after all. I popped most of those bubbles, but a few remained. They popped themselves as weeks turned to months.

I remember the third pair, which we were fitted for at her preschool. The orthotists were so friendly and her physical therapist was excited about a new pair. I was happy that Maya was happy. Again, we searched through pattern swatches and she squealed upon seeing a green rainforest pattern that had alligators (a big love at the time). I remember how quickly she learned to take these off in the car, and I remember countless white pads being lost during those undressings. I remember her love of the splints, the way she wanted them on in the morning, how I knew that they must actually feel good . . . maybe like the way my knee brace eases the pull and pain on my weak knee when I walk? I'm not sure. I wish I knew what it felt like to have her feet, what the splints feel like around her ankles. I wish she could tell me.

And now, again, we begin with the fourth pair. She is blissfully excited about the blue butterfly pattern and didn't want to take them off yesterday. Part of getting new splints is evaluating the fit, and I'm supposed to check if any parts of her feet look raw or red, but she wouldn't let me take them off to check. "Maya, how do they feel? Are they good or tight?" I asked. "Doh" (good) she replied, with wrinkled brow, the subtext being don't-try-to-take-them-off-I-said-they're-good. I love them because she loves them, and I hope that they make her more comfortable. She is delighted, and I am happy for her.

We need to pick up a bigger pair of sneakers, and then she'll be in them more or less full time until they become too small, at which time they'll go to the small heavy shoebox. And I wonder, years from now, when I pull out pair #4 with the butterflies, what memories they'll bring with them.


Anonymous said...

Dear tenderheart, Thank you for this wonderful post. I appreciate your lion fierce advocacy, your humanity, your devotion and your thoughtful, reflective moments. I join the legion of others who say thanks for sharing your journey with us.

Anonymous said...

We still have my daughter's back braces from years pre and post scoliosis surgery. The boxes take up a lot of room. She does not live here anymore as she is grown. She is not ready to let go just yet. Now with your poignant photo of May's progression I think I see why.

Anonymous said...

I am an SLP and was wondering if I could get some information about the AAC camp. I didnt know of one in the tri-state area and would love to have that info to give as a resourse to parents. If you are willing to share this information, you can email me at marnina@aol.com. I love reading your blog and I agree that it's horrible how little people know about AAC and how quick they are to discourage. As an SLP who works with AAC and kids who function very differently, I too have seen the wonders of how AAC can change lives. And the best part is seeing the families reactions! you have a vast amount of knowledge and it's so great that you share it with other parents!
Thanks, Marnina

Anonymous said...

We are on pair #1 of our daughter's foot braces and will be looking to get pair #2 this fall. I think it's amazing how these little pieces of plastic and Velcro can hold so many memories and emotions.

Anonymous said...

This is kind of a different scenario, but seeing the pictures of the splints all lined up reminded me of this. I had a friend back in high school who had a prosthetic leg from the knee down --he'd been missing the leg since birth. At his graduation party he had lined up all of his prosthetics in size order from tiny baby to big high school boy. It was really neat to see.

Anonymous said...

Hi there! I know this post is from a while ago, but I was just reading back a bit. I wear SMO's exactly like your daughters. I am 21 and have a progressive neuro disorder. For me, they keep my arches from collapsing and make me feel more stable. They also provide pressure around my whole foot that feels good for some inexplicable reason. If Maya has sensory issues thats probably why she likes them so much. She has way better pattern options than me though!