Saturday, January 02, 2010

A member of the tribe

On December 30, after more than a year of various difficulties, we helped Robert stand up in his new braces and walk through the house. He's had AFOs, ankle-foot orthotics, for many years. We generally call them 'braces,' as we're not that fancy. The AFOs keep his heel cord stretched, otherwise known as the Achilles' tendon. If the heel cord atrophies (Robert points his toes a lot and is mostly sedentary), surgical lengthening is required. The AFOs keep his foot at a 90 degree angle to his leg.

Robert has never much cared for his braces, and would often go into extension, hips thrust forward, legs extended, back elongated, toes pointed, as we tried to put them on. As you can imagine, this makes it difficult. In order to flex his foot and slip the brace on, I would often have to bend his knee. His spasticity makes him very strong. And the braces are usually in one piece, like a large, nearly knee-length boot, open at the front and fastened by three straps.

Working with a moving target, it sometimes took 10 to 15 minutes to get them on properly--if Robert's foot is not placed properly, they can cause a lot of pain. One caregiver wouldn't go to the trouble of flexing Robert's foot and, instead, strapped his legs in with his feet on tiptoe and then made him walk around. You can surely imagine why Robert regards these as medieval torture devices.

However, the tall backs of the braces give Robert enough support to bear weight on his feet and stand to the best of his ability. If he has the right sort of support, he can ambulate.

I am the right sort of support. Full-support walkers of varying brands have been tried, but Robert doesn't move forward much at all in them: it's probably the nature of his brain disease. Despite a stepping reflex, he has difficulty initiating movement, and no walker we've ever had can really help him with that.

And no human 'walker' is better at helping Robert ambulate than me. I grip him under his shoulders, urge him to press down on his feet, and his knees straighten, and when he's not too weak, he can press down into the floor with all his might--then I prompt his leg with my leg, usually his right, and he steps forward. His left leg follows in a reflex fashion. And if I rock his body gently, side to side, the stepping reflex will continue. Other people try, but it may be that Robert simply feels most secure with me. We've, the two of us, been doing this for years.

Robert's new braces have a fish pattern on the outside (the kids get to pick a color or pattern when they're measured) and come in two pieces: one piece for the foot, and a tall support for the leg. They're called turbo braces. Because of the two-piece construction, the inside of the foot brace can be made of a softer material. The foot plate is custom-molded to follow the contours of his feet--feet without a callous or a rough patch on them, if you can imagine. The bottoms of his feet are as soft as a baby's.

Frankly, I was amazed that he was able to bear weight and move forward on the 30th. Since beginning the biotin therapy, he'd lost a lot of the helpful spasticity that allowed him to stand--and his old braces hurt his feet. Thus, he refused to use his stander.

But the desire to press on must be hard-wired in all of us. As well as a need for self-determination, of which walking is such an apt emblem. He did two laps of the downstairs before his legs gave out. His joy was, as they say, palpable, hanging in the air like fruit for the picking. Edith cheered him on, and that was a useable form of energy to him. For those minutes, it was as though he knew, for sure, he was a member of the tribe.

When Robert was 13 months old, just before his metabolic disease was triggered, he was almost walking. I would hold my finger outstretched, he would grasp it, and step off. Every day, we were sure he would take his first step on his own.

Those days, I had to bend my frame over to help him--now he is nearly to my chin.


Lauren said...

Oh, Jeneva! This is such an amazing story. Thanks for articulating and sharing this moment. Robert's beauty, and your beauty ("I am the right sort of support.") shine through the gravity and mechanics of the situation. What comes through after all the difficulties is "his joy...hanging in the air like fruit."

Carlen Arnett said...

The two lines Lauren points to are exactly the ones that caught my attention and made me beam, too. The rhythm of "...right sort of support.... I am the right sort of support" brings me into the crux of the physical intimacy of the moment, at the same time respecting privacy, too. And "joy...hanging in the air like fruit" -- ahhhh, what else can be said after that? Jeneva, this is as beautiful as it is important, this writing. I think of the art of concentration, the poet's art, coming into your prose in all kinds of subtle ways. And the pleasures it yields are tremendous.

Dale said...

Thank you.


Elizabeth said...

Ahhhhh--yes, walking. He is a member of our tribe. Sophie lives to walk. Really. So I do get it. And I loved your description of you as the walker, too -- the way your body and instinct moves to his.

Go Robert.

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