My Son Is Floppy: Life With a Baby Who Has Hypotonia

Health & Wellness on 03.13.11
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Photo credit: rguidici via flickr Creative Commons.

My son is floppy.
That's the word doctors used when he was born: "Yeah, he's a little floppy." I was pleased that the medical community is so whimsical with its terminology, but I wasn't sure what it meant. Every time they said floppy, I pictured my son - officially named Stefen but lovingly and sarcastically dubbed The Heir, because we are whimsical with our terminology too ("The heir to what?" says my husband) - as a bunny, hippity-hoppitying through a dell or whatever, one white fuzzy ear standing at attention, the other ear charmingly drooping south.

 

What it means is that The Heir has low muscle tone, mainly throughout his torso; hypotonia is the less colorful term. He rolled from birth, but then didn't push up during tummy time until 6 months. He can lock his knees while in a standing position but cannot support the weight of his trunk. And now, at a year old, his gross motor skill development has stalled. He isn't sitting independently, bearing weight on his feet, crawling, standing, cruising, walking. I say he suffers from being excessively handsome: people will do anything for you when you're soooo good-looking, so he's all, "I shall simply lie here while you hold me aloft and feed me grapes. Carry on. You are mediocre-looking."

Here are things The Heir does do.
He grabs my glasses off my face with the brute force of 10 strongmen, laughs at whatever happens to be residing in his diaper, waves hello to himself in a mirror, throws an average of six spoons across the room per meal, prefers to see the world while hanging upside down.

But he cannot sit.

So he's begun physical therapy through Early Intervention, an exceptional federal program that sends help to your home, free of charge. His therapist is so outstanding that I question my own parenting abilities and want him to live in my house. I ask the baby occasionally, "Do you feel stronger? Are you thinking this might help?" He sticks his thumb in his mouth and says, "Goaigoaigoaigoai."

I have mastered Zen and the Art Low Muscle Tone. Sort of.
I am feeling many things about this. I've been pretty calm because it's solvable. Doctors have ruled out any larger neurological or genetic issue. And this man who comes to my apartment once a week is the solution to the problem; he is relief. (He also has a pair of socks that has toes, which I would normally find creepy but totally works on a physical therapist.)

But I'm also somewhat breathless, because as much as you try not to be That Woman, you can't help comparing your child to other children. I am involved with a truly excellent moms' group, and every time we get together, I see what their babies are doing that Stefen is not. But he will. And moms' groups prove that everybody has their Thing: some babies aren't great sleepers, some aren't great eaters. My kid sleeps and eats, but he doesn't move. So while those babies are cruising around the joint, The Heir gets snuggled because he's still mushy in his immobility. I try not to think about how, while I'm more than happy to offer my baby for bonding, the fact that he can't sit in a toddler pile-up means he can't interact and explore his surroundings.

Which leads me to the Guilt.
Everything leads to Guilt, doesn't it? I haven't been a mother for very long, but ugh, there is a lifetime ahead of this stuff. I want Stefen to get into trouble. I want him to cruise up to a shelf and pull a book off of it. I want him to crawl over to the cat food and stick his fist in it. I want him to stand at the coffee table and delete this document off my laptop. I want him to do the things he should be doing. But I'm also relishing that he's not, and I feel horrible about it. He's not jumping off my lap to follow the cats, and I can plop him onto the bed while getting ready for work and not worry he's going to fall off. By not moving too much, he's staying a baby for just a little while longer. When he moves as he should, our lives are going to change, but also, with every milestone comes a closed chapter of something beautiful and fleeting.

I believe that pregnancy is the last time you can keep your child for yourself; the moment they're born, you have to learn to teach them how to make their own way. So I am. We're building Stefen's muscles so he can walk away from me and toward me, as he will, I hope, for the rest of his life. But for now I'm allowed to carry him, and he's going to yank my glasses off my head, and I'm going to panic because they're Miu Miu. He may not be able to sit, but the kid knows style.

 

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