September

By Jocelyn Duff

img_0052September is a bitter-sweet celebration for most Moms I know. It is hard to say “goodbye” to those lazy, unscheduled days spent reading on the hammock, followed by a luxuriously slow, we’ll-get-there-when-we-get-there trip to the beach. The race to get out the door forgotten, the nightly slog of making lunches gone. And yet, the lack of routine and nagging leave my kids reverting back to bad habits and hair that’s gone un-brushed for days. But in our house September carries with it a push-pull of joy and sadness that feels even more magnified.

September means some physical relief to the daily routine of lifting and assisted walking. Talia weighs about 65 lbs now. Her muscles are so atrophied from the progression of her CMT that it makes lifting and moving her around even more difficult—sort of like trying to lift and move a 65-pound bag of water. My 90-pound kiddo can grab on with arms and legs and hold herself up against you. I could carry her around all day. Tal has lost all of this—some days just holding her head up is a challenge. And while I often have to remind myself that her day is much, much more challenging than mine, it is hard not to wallow in the physical demands of helping her through her day.

On the first day of school this year, we started the day like any other. Talia calls John or me into her room to help her to sit up in bed. She’s not been able to do this for nearly three years now. Gone are the days when we left her bright, yellow walker at the side of her bed so that she could get up and come find us all by herself. It wasn’t that long ago, really. Just last year, before she fell and fractured her leg and ankle. In some ways that feels like a whole different, little person. Where did she go?

We help her to wiggle her bum to the edge of the bed and then help her to stand by supporting her under her arms, our arms wrapped around her belly, gently coaxing her legs to support her weight and to step towards the bathroom. Without her braces on the journey to the bathroom becomes a tentative shuffle, ending in a dead-lift/slide over the toilet seat. Over the past year she has lost a great deal of arm strength and I still forget that once she’s on the toilet, she needs help with lifting her arms up, in order to get her hands in her lap; otherwise, they would dangle limply at her sides. She used to like to read a favorite book in the bathroom, but can no longer hold it in her lap. And as I look back on this small change to her routine, I realize that this was one of those things that she stopped doing without us paying much attention to. She never brought it to our attention, or complained, she just simply stopped asking for a book.

And so the morning unfolds, with full assistance needed with toileting, then another shuffle to the kitchen table for breakfast. And on this first day, with its return of the morning routine time-crunch, I realize that I’ve probably not allotted enough time for Tal to finish her peanut butter and jelly—her new “usual” each morning. She used to love yogurt with some sort of berries and “Joe’s O’s” piled on top. It occurs to me only just now, again, as I write this, that she has made this shift, not because she likes PB and J’s more, but because it has become such a chore for her to eat with utensils. My sweet girl has, once again, devised her own plan of how to compensate for her losses. My heart aches when I think back to that morning so long ago (when exactly was that? I wonder) when she first eschewed her long-time favorite breakfast. I imagine her sitting there, in her “chair-chair”, a contemplative look on her sweet face as she figures out a way to overcome this new challenge.

The flurry of teeth-brushing, hair brushing and face-washing take place at the kitchen table because it is just too difficult to shuffle back into that bathroom. Getting dressed eats up about twenty minutes, start to finish, including her “big brace” and orthotics. This Summer has been brutal for Tal, in her long, plastic brace, requiring long pants and socks. Such a luxury to wear shorts, or to walk in bare feet. Or to be able to walk at all.

Last year I acquiesced and gave in to school bus transportation for Talia. Okay, so I’ve only agreed to morning pick-ups so far. It was hard to give this over to someone else. As that bright yellow bus pulled into our driveway last Fall Talia was beside herself. Her smile stretched the width of her face as the bus driver backed her wheelchair onto the platform. Up she went, looking so proud and independent. I climbed onto the bus and rechecked all of the chair tie downs, buckles and belts (you can never be too safe) and gave her a kiss goodbye. The bus rolled gently onto the street and I waved, trying to look exuberant and unconcerned. She was smiling broadly back at me. But why wasn’t she waving? She must be upset, I thought—something must be wrong. And that’s when it really hit me. She couldn’t wave back. She could no longer lift her left arm up high enough to reach the window. And yet she was smiling. And happy. I held back tears as I waved furiously after the bus, until it was a mere, yellow speck down the road.


SEPTEMBER IS CMT AWARENESS MONTH.
CMT is under-diagnosed, under-researched, under-funded and misunderstood.
To learn more about CMT4J, a rare form of CMT, click here.

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