We are counting down the days until Ulysses gets his first set of prosthetic legs. It’s exciting! Legs! Standing! Walking! We’ve been waiting so long for this! Yay! So why am I so dreadfully nervous?
I’ll tell you why. Up until now, Ulysses’ “special needs” haven’t necessarily been all that special. (yeah, I know how ironic that sounds, especially considering his major surgeries in his first year.) For most of our everyday life, though, which is largely at home, he is just like any baby. He might not LOOK like most babies but his development is fairly typical. He’s a busy, twinkling elf who likes oatmeal and chasing the cat. He’s tiny and portable and I scoop him up and onto my hip easily, like you do with little crawling babes. And, of course, my crawling babe has no lower legs. I don’t forget entirely about his differences, but it’s just who he *is*. Certainly, his legs, both before and after amputation, have impeded typical physical development. But, my seven year old didn’t start walking until fifteen months. Having a fourteen month old still crawling isn’t that big of a deal. But very soon we’ll be negotiating prostheses, making sure they fit right and are comfortable. Will they pinch or rub? Will he hate wearing them? Will pants fit over them easily? Will he still be able to crawl while wearing prostheses? Will it be awkward to carry him? Is it safe to have him in a rear facing car seat while he has them on? I have all these new concerns now. And it’s like we’ve reached the point of no return. Oh, sure, we crossed that point when he was born. And again when he had his leg surgeries. But prostheses? This is the real deal. And it’s such a big deal.
He had his residual limbs molded the day after Christmas, the day he had his last cast removed. At that appointment, his prosthetist told us that we could choose any fabric we liked to be used in the making of his permanent plastic sockets. Basically, they can plasticize any fabric and mold it into the shape of his limbs. Sockets are customized for an individual, and they connect to the “leg” portion of a prosthesis. Because he’s so tiny, the whole leg, socket and all, will be very small, so basically I could choose less than a yard of any fabric I wanted, to turn into the top portion of his new legs. I had a week or so to think about this, until we went back for his “check socket” appointment.
And that’s why I had an anxiety attack freak-out in the middle of a fabric store. I realized the inevitability of fabric chit chat (“can I help you find something?” “oh, you know, just deciding if I should go with a geometric or a whimsical print for my son’s prosthetic legs.”) and I didn’t want to talk to anyone about it. And nothing seemed good enough anyway. So I left. I left the fabric store without new fabric and thought I’d choose something old from my stash. But when I got home and looked on my fabric shelf, nothing was right. How do you pick a fabric for your baby’s legs? I know the color of his sockets won’t make any difference to how he learns to use these new legs, but it felt so important to me.
The night before we went back to Shriner’s to check his socket fit before the actual legs were manufactured, I made a decision. I would use something meaningful. I would use fabric that belongs to something well loved and sentimental. Instead of figuring out what pattern or color would be just right, I turned my thoughts to which scrap of textile memory to re-purpose. I didn’t have to think long. I had the perfect thing in a drawer in my bedroom, something that has been a part of our family for a lot of years, something that is lovingly remembered and appreciated. When I fetched it and folded it up to take to the prosthetist, I realized that I never would have found what I was looking for in a fabric store. I needed something that matters to me. I know it’s a small, silly thing. I know it won’t change anything for Ulysses. I would slice off my own skin to cover his legs, if I thought it would help, and that would still be a small, silly thing. But he will learn to stand up in legs that have already been infused somewhat with love and good thoughts. I know that’s a ridiculous idea, but give me this hippie dippy woo woo moment, because even secondhand placebo benefits should count for something. I mostly feel fairly unhelpful and useless over here. I must default to a team of professionals for Uly to do the stuff my other babies, and most all other babies, did without any outside help at all. It’s weird and hard having other people so involved and invested in something as seemingly simple as a baby learning to walk. I’m not accustomed to sharing this much of my babies with other people. So understand, that maybe me picking out fabric isn’t just deciding on something that looks cute. For me, I needed it to be something that would say: this is my baby, I am his mama. Ulysses is super and loved and important, don’t you know? Can one piece of fabric say all that?
So, what is this magical, mystery memory fabric? We go back to Shriner’s very soon for the big reveal. I hope that what I gave them was adequate for the socket manufacturing. I’m nervously anticipating what they will look like. The plan is to have his new legs end in solid, wide foundations for a while, before he gets feet (for putting into shoes!) so that Ulysses can learn to balance. I am prepared for that but I’m still so nervous. But I look forward to taking a picture, at that point, of the finished product. And then I’ll explain where the fabric came from and why it is meaningful to me. I hope you forgive my build-up without specific details, but I think waiting for a picture will make it better.
I know those of you who faithfully read here are excited right along with us. And I thank you for sticking with me, even though my posts have been sporadic. I promise I’ll keep plugging along with this blog if you promise to keep stopping by and thinking good thoughts about that twinkling elf of mine.
(recycled instagram pics showing a little of the prostheses process -say that three times real fast!- and the most recent picture of Uly I had in my phone; we were hanging out in a waiting room together for a few minutes the other day. I swear I intend to take some decent portraits, but he is so fast and squirmy. I feel successful when I know where he’s at and what he’s getting into; taking good pictures will require extra adult hands and ideal planet alignment.)