The Path To Walking (or, more of life with Downs)

100_2931People often me how old Julianna is. That’s a pretty typical question for any child, but even more so with her. She defies age typing. She’s tiny, but she’s long. She looks like a toddler, but she looks like a baby. She interacts like an older child, but doesn’t walk or pull up or cruise. You see the difficulty. She’s ageless. J So people ask a lot. It usually leads into a conversation about Down syndrome.


One thing people often don’t realize—and something I never realized, though it makes sense—is how much the later developmental milestones rely on the early ones. People ask, “Are you working on walking yet?” The answer is, yes—we’ve been working on walking since she started PT at 2 months old.


You can’t walk till you can stand and bend your knees. You can’t stand and bend your knees till you have strong legs, and can balance with your knees unlocked. You develop leg strength and balance by bouncing and crawling. You can’t crawl until you can sit and transition into all fours. You can’t sit and transition until you can push yourself off the floor. You can’t push up till you can hold your head up.


100_3045So, to work on walking, we have done pulling up, crawling, stair climbing, crouching, treadmill walking, pool walking…well, you get the idea.

This morning, Gerti brought us long leg braces called “Jump Start.” They fit inside her shoes. Yes, we put shoes on Julianna for the first time in her life today. (As an aside: We’ve had lots and lots of shoes given to us, as you can imagine. People used to argue with me when I said I didn’t put shoes on her—“they’re just for show,” “but they’re so cute,” “don’t you want to keep her feet warm”—but I’m the practical one, who gets tired of searching for the shoe that falls down between the couch cushions because there’s no prayer of them staying on.)


It was truly amazing to watch Julianna discover stability on her feet. She stood up straight, no butt sticking out, beside the toy kitchen set, her entire body supported only by one hand. No leaning, no stabilizing adult hand. She flung dishes every which way, hurled the stacker rings to the floor, and generally gloried in her independence. And then, she plopped down on her bottom and grinned really big, stuck her tongue out a mile, and clapped her hands. “Yay me!” she seemed to be saying. I’ve never seen her do that before, either.


Then, Gerti took her on a walk across the floor to the treadmill. Gerti had her at the hips, but Julianna took the steps, Julianna did the work. It was astonishing. Humbling. Beautiful. “I praise you, Lord, for I am fearfully, wonderfully made.”


Lately Alex has taken to asking “How do we make ______________?” Everything from windows to steering wheels to babies and toes attract his attention. I tell him that we don’t make babies and toes and trees and branches and blackberries, God does. God does all the hard work.

It’s a lesson I tend to overlook. Thank God for my children, who bring it front and center.