Roll with It…Adaptive Living

They say animals adapt to their environment. The butterfly can change its wings to match the foliage. The rabbit can freeze faster than the hounds can hunt. It’s adapt or perish. When I say adapt, I’m not talking metaphysical here. For us it’s literal. Here’s a list of the “adaptive devices” Charlie uses on the regular:

  • Compression suit (picture old lady socks, the kind they recommend for long international flights, only as a full body suit. Spanx 2.0)
  • Leg braces
  • Wheelchair with tray
  • Adaptive seat for the house with optional rolling system and canopy (Why the canopy? Why the wheels? Where are we going to go with a chair that resembles in both size and weight the Iron Throne from Game of Thrones?
  • Stander for standing with University of Tennessee orange fastenings (a nod to my husband)

    The twins like to practice their standing too.

  • Gait trainer for walking
  • iPad for speech
  • Leckey bather for…bathing

    The bather in all its glory


This is all great…for now. But yesterday this happened:

Riding low. How did he fit in the top part yesterday?

I took Charlie to a craft store (Alas, I am not a crafter, but I needed a picture frame.) and when I went to put him in the upper part of the shopping cart, I realized he no longer fits. With arms straining and still a half a length of Charlie yet to go, I just could not origami him into those leg holes. Clearly, he was not broken up about it. But I had to take a moment. This was the beginning of the end of our current situation.

The signs have been coming on for a while: 1) I can’t easily carry him from the car into school. 2) He’s the longest four-year-old I’ve ever met, like a pale Gumby. 3) His room is upstairs and might as well be outer space for all my trying to get there with him at bedtime. 4) Our house has stairs at every single entrance. We carry the wheelchair and then him.

Behold, the longest four-year-old.

So we are going to have to adapt our adaptive living situation. We’ll eventually buy a van with a lift. We will beg our insurance for a motorized wheelchair. We will either move Charlie downstairs to our master bedroom or hire a contractor to make our house more “handicap friendly”: ramps, wheel-in shower, motorized lift on stairs, etc. The Cerebral Palsy organization has a great resources list for companies who specialize in this kind of gig. For moms who need to be in the know, here’s the link:

We must evolve or devolve. We’re animals in the wild and we’re fighting for our territory. So we will create a workaround. It’s what we have been training for. Forget marathons or Tough Mudders. This is our test of endurance. Without Charlie I might never adapt. I might never see change as both necessary and good. But he calls me to it. He changes my stripes to spots and this I know for truth: he’s the only one I’d give up my bedroom to.


Just doing a little Thinking Out Loud.