amputee toddler

“don’t throw your leg at the cat!”

runninguly

I feel a little guilty every time I call Ulysses “The Baby”, even though, as the third (and final) child in our family, and with two siblings quite a bit older, he will always be the baby, to some degree. He’s twenty-one months old now: a toddler by any counts. But what do you call a toddler who doesn’t toddle? (this is not the set-up to a joke! I’m serious!) The very word conjures up wobbly steps and independence. Uly’s evolution to walking has been, remains, complicated and very dependent.

He is a toddler. He has all the parts of toddlerdom generally assigned to this age, minus autonomous steps. It has been a frustrating stage for him. It’s been a frustrating stage for me, too. The only thing separating Ulysses from other children his age is, well, the ability to run around. But typically-limbed babies aren’t given a lesson on wanting to walk. Nobody needs to tell a baby, hey! you want to stand up taller and get around like everybody else does! Babies just do it. Their bodies and brains work together to meet developmental milestones. But what happens when a body can’t keep up? The brain gets frustrated! Crawling is still his main self-ambulation, and I think he’s pretty much done with it. He’s a good sport, but there are times when he tries to pick up something large and move it, or reach for something too high, or just get out of my arms already, and he screams that impatient toddler scream. And there’s not always something I can do about it.

After the longest spring, and a gradual return to normalcy, this summer has seen us getting back to weekly physical therapy appointments, back to lots of prostheses practice at home. Uly has always been thrilled with his legs. His superlegs, his kicking legs, his walking legs, as we call them. But he can’t put his legs on by himself. It takes me a few minutes. And he can’t walk without a spotter close-by. And he can’t take steps without holding onto something, a table, his walker, my hands.

But, he’s walking! His steps are every bit as determined as any toddler you’ve ever met, if not more. Ulysses cannot yet take unassisted steps, but he is absolutely walking.

And we are so excited for this boy. It’s a long road ahead of us still. And I think that might be the undercurrent of my frustration. I am shy to talk about his legs and his walking, because I think there is a misperception that once an amputee has prosthetic legs, walking is a snap; heck, he’ll be running races in no time. While I certainly appreciate the encouragement and optimism sent Uly’s way, the truth is a lot slower.

Something clicked in the last couple of weeks and Uly understands now that his superlegs aren’t just a funny game we play sometimes. He has started to get it. He has started to ask to put them on. He says, “wah-wah-wah” (walk walk walk) and shakes the little basket where we keep his prostheses supplies. When he gets going with his walker, he is so freaking fast. I have to hold on gently to the back of the walker to provide a bit of drag, so he doesn’t run over himself!

But it’s still a very deliberate thing we do, leg time. He needs direct assistance, which is actually not unlike all the rest of the time, when he needs help doing the toddler things he is busy doing all day. I have introduced my little guy to several people like this, “so this is Ulysses, less bones, more spirit!” and that’s just how he is. Uly is a firecracker of delight or mischief. He is quick and busy and wants all the attention, all the time.  But that busy attitude in a baby-who-wants-to-be-running-but-can-only-crawl means the up-down-up-in-and-out-of-mama’s-arms stage feels infinite.

I’m starting to see glimpses of his future walking self. I’ve seen him let go from his walker with both hands, balance alone for just a moment, and then reach out for something else, a wall, or a chair. He is making significant progress every day.

I can get really stuck in the weeds of borrowing worry. Will he ever be able to play unassisted outside? Will he be able to negotiate walking on stairs? His residual legs are so hot and sweaty after one hour of prostheses wear, what will happen when he starts to wear them all day?

Those are valid concerns, but I have to stop myself from thinking too far ahead. When he was a newborn, I couldn’t imagine how he’d move around at all, and yet he turned out to be my earliest crawler, my most determined to Go baby.

We’re doing something completely new and previously unknown to me. We are so lucky to have a team of therapists and prosthetists helping him, and cheering us along. So I don’t have to invent the wheel. We have helpful professionals in our corner. But in my murky brain, it can feel solitary and unsure. The What Ifs and Hows can be overwhelming.

So we take it one step at a time. I’m sorry for the cliche but, how else can I describe the process of letting go expectations as my amputee baby learns to walk?

Although, if it were up to him, I think he’d be running already! Look at Uly go!


(forgive my wonky narrow video. I neglected to tilt my phone to landscape, too distracted by the adorable laughing baby hurtling himself down the sidewalk, and if you’re looking at my blog on an idevice, i’m not sure the video will play. darn it. Also, the title of this blog post? totally something that came of my mouth tonight.)

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Categories: amputee toddler, Super Uly | Tags: , , | 10 Comments

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