If you’ve ever lamented the frustration of putting shoes onto a squirmy baby, I kindly suggest that perhaps you have never attempted attaching legs. The good thing is that Ulysses is overwhelmingly delighted by these odd plastic spheres (you should see him start to kick as soon as they’re attached!), but the fit is tricky and precise and requires just-so positioning. Prostheses are a science, but also a guessing game of trial and error. We’ve had his first set of legs for over a month now, and after a few adjustments with his prosthetist, I think we have a fit that will work for him. (you know, until he grows.) Not all prostheses are created equally. Each socket is a custom creation. His sockets use suction to keep his legs attached. Because he is a chubby baby, it’s quite a challenge to have sockets that fit so exactly as to create sustaining suction. Every time he shifts, his chub shifts and jeopardizes the fit! And without the suction, his legs fall off, defeating the whole purpose. The current purpose being foremost to balance.
Let me back up a minute here.
Yay! Uly has legs! I have seen my grinning elf of a boy standing up!
It was apparent, before and after his birth, that he would never walk. Those exact words were said to us, “he will never be able to walk.” And left as he was, that is true. Had we not chosen to intervene with drastic, major surgery, that would remain true. The legs he was born with were not walking legs. We knew from very early on that the only option was amputation. For some children, with less severe bone deficiencies, reconstruction is an available choice. For Uly, there was only amputation or never walk. It was that obvious, that clear.
I remember when we met our surgeon and therapists at Portland Shriner’s hospital for the first time, Uly was only a couple of weeks old, and they said he would have no trouble crawling. They said he would hit every developmental milestone until pulling up to stand. I remember that I spontaneously burst into tears because at that point, I was still so raw and scarred from his birth, I couldn’t even begin to imagine him crawling.
But they were right, you know. He was my earliest crawler. He is my fastest crawler. He is -BY FAR!- my “busiest” baby. He is the baby who gets into everything and wants to Go! Move! Do! all day.
That busy, fiery spirit will serve him well, because learning to walk with prosthetic legs is NOT going to be easy.
Walking might be a while yet. We aren’t in a hurry.
Right now, we’re working on balance. It’s a lot like coaching a baby to balance on stilts. No, it’s exactly like that because Uly’s first prostheses are essentially stilts. He has no grounding feet to feel and stand upon. We have artificially hoisted him up into the air and he teeters there, top heavy.
In our house, we’ve taken to calling them superlegs. I know that some families with children in prostheses (upper or lower limb) use the term ‘helper’ (helper arm or helper leg). But ‘super’ as a prefix seems to fit better to me. Extra, beyond, more. He has superlegs and we already called him Super Uly and we do think he’s Super. He’s learning how to do a hard thing that is far beyond the requirement expected of most babies. We clap and cheer when typically limbed babies figure out balance and standing and steps. And it IS thrilling! But take that same typical baby and strap them to some stilts, and our jaws would drop. Can you even imagine?! But, of course, that would be an exploitative stunt, and in Uly’s case, and for other amputee babies, it’s a crucial life skill. Walking comes in handy, wouldn’t you agree? So while we obviously aren’t doing this for the amazement factor, it IS amazing. My wee chubby baby who barely speaks a few words is learning to balance on stilts. It blows my mind, it does.
I wrote a while ago that before his superlegs were made, I had the option to provide his prosthetist with any fabric of my choice. The legs are plastic, but fabric can be added to the plastic molding for an extremely individual appearance. Every socket is one of a kind already, because no two residual limbs are ever the same, but there is truly no limit to what the exterior design can look like. I had a small freak-out about this. It’s not that big of a deal. The color or pattern won’t help him or impede him. But it felt like a heavily weighted decision to me: I needed to choose something meaningful.
The fabric on Uly’s superlegs is from a purple woven baby sling, a sling that I’ve carried all three of my babies in when they were tiny. I’m a big believer in holding your babies as much as possible. Baby slings and babywearing and keeping little ones close are all common these days. When my fourteen year old was born, these things were less common. It would have been easy to default to what “everyone” did, but that didn’t feel right to me. I am tremendously grateful that I honed into my parenting philosophy (if you can call ‘instinct’ and ‘trust’ a philosophy) before my first was born because I believe that laid the groundwork for who our family has become. I still wear Ulysses frequently (every day! sometimes for hours a day, depending on his neediness!) but the one piece purple pouch sling I use for newborns has long since been outgrown.
So that’s the story behind the print on his new legs.
In other exciting Ulysses news, right about a month ago he started doing something so rare and wonderful I barely believe it myself. He started taming unicorns. Which is to say, he started sleeping through the night, like no baby of mine has ever done before. I would have been as surprised to find a mythical equine beast whinnying in my bedroom. Seriously. We sing and nurse and rock in the rocking chair, and then he sleeps. All night. For perspective, my older children did not sleep through the night until they were past three. That’s three years of me not getting a full night sleep myself, times two (ok, 7 years apart, but still). I was tired a lot, sure. But I kinda just figured that’s how my babies are. Ulysses is a game changer, in every way. I sure did not expect to turn this corner so soon, but I am so effing glad about it. Fingers crossed that writing about it doesn’t make it go away. Unicorns always spook and run if you try to take their picture, right?
(thanks for not minding about my quick, blurry photos. if i had a choice between a fake life and beautiful pictures or a solid, authentic life with blurry captures, i guess i’d take the blur. ‘leg time’ isn’t a photo op, it’s therapy, but i’ve tried to snag a few when i can, so we can remember, so he can see himself when he’s older. you were always so busy, i’ll tell him. we could barely keep up. that’s how it is around here. who sees the baby? where’s the baby? ack! what does the baby have? it’s like that. in the middle picture, he’s wearing a shirt i bought over 7 years ago when the big brother was born, on the back it says ‘Changing Hands Bookstore’, which is the indie bookstore we lived near and frequented when we were in Arizona. it was a cool shirt and i liked it, then. but it seems extra perfect now.)