Not a whole lot to add this week. Surprisingly. I mean, we did move halfway across the county, subjected our son to an invasive and debilitating surgery followed by painful and strenuous therapy and other sufferable tasks, but we have evolved to accept this as our normal. But such is the life of raising a child with a disability: adaptability. And, nobody is a better example of that than Drew. So, I’m not complaining about anything we’ve been through the last six weeks.
Ok, maybe I’ll complain about my back and my neck a little bit, but please forgive me if I feel a little entitled to complain a little! But, it’s mainly because my life has been consumed by a work project that has me enslaved to my computer for hours and hours at a time. So, I can complain about that, right? But, I’m not one to complain and not offer solutions: I need to find a more ergonomic chair. Although, on second thought, I don’t think it’s my chair that is the problem. After all, I’m pretty sure it is an ergonomically-designed chair. But, my posture is terrible. Gotta fix that because my back is so sore and my neck is so tight that it is a sacrifice not melt into a hot tub. One day, Janel. One day.
But, despite our trials and tribulations, I was pleasantly surprised the other day as I, for the first time, observed how tall Drew truly is. Even since his birth, we’ve never really known how long he was. The contractures in his legs prevented his legs from fully extending. His right leg went a little over 90 degrees before a hard stop and his left to almost 90 degrees. For some reason that never really seemed logical to me, nurses would always measure him from his head to as far as his right leg would extend. Instead of tracing the length of his body following the bend in his leg, they would ignore the five to six inches that would extend beyond their mark had his leg fully straighten.
Well, I was carrying him into the bathroom for a diaper change when, out of the corner of my eye, it struck me that he was so dang long. He was no longer this little bean in the nape of my neck but it looked like I was carrying the truck of a tree! I carefully tried to hold him upright as much as I could without causing any discomfort to visualize him in a standing position and was astonished. So, my curiosity peaked, I immediately retrieved a length of string and measured his from the top of his head to the bottom of his foot. Of course, with his leg so straight it didn’t involve a lot of manipulation of the string. And, to stand up and hold the string up so the bottom of the string trailed the floor by my side and see that he’s equal with my hips was absolutely shocking.
I, for the first time in four years, know how tall my son is. Thirty-five inches! And, for the first time, see him as a full-grown kid. In his previous state, in the infinite sitting position, I always marveled that I got to keep my “baby” longer than any other mother. He was always so small and so innocent with his chubby little legs and pink cheeks. But now. Now, he’s a kid. He’s half as tall as me. When he’s finally able to stand, it will require minimal bending over to pick him up or even put my arm around him. His speech is so fluent and he is so dang smart with his philosophical observations and ideas. I’m just now accepting that Drew is finally growing up. In more than one way.
In unrelated news, we have only five more days of adjustments for the bottom portion of Drew’s fixator! We do have a doctor appointment with the surgeon on Monday and there is a possibility that more adjustments may be needed according to his expert eye. But, to my amateur eye, his foot looks pretty straight up to me! (see below) We have about a month of adjustments on the top portion (if those don’t change either.) We’ll see!
And, Drew and I are anxiously awaiting Daddy’s return “home” this weekend after his incredibly long shift at work. Not that I don’t miss him every other trip, but this trip was especially tolling on my strength and patience!
So, here is the six week progress report of his right leg: