I realize it has gone too long since my last post. I’ve been thinking about this blog a lot lately and between being overwhelmed at work and Drew sailing along as happy and go-lucky as ever, I’ve had a little bit of writer’s block. I dedicated this blog to his TAR Syndrome and our lives as parents raising a child with some challenges so I resist the urge to post about our daily activities unless I think it’s relevant. But, it strikes me that we have a child with the physical and occupational challenges that Drew overcomes and life is so normal for us that I can’t think of a single thing to write about!
I’m really not that optimistic of a person. That’s not to say that I’m a “rain-on-your-parade” sourpuss, but I have no more of a sunny outlook on life than the average down-to-Earth person. But, pretty much all of the time, Drew’s TAR Syndrome isn’t the focus of our attention, discussions, or activities. We go about our day like any other family and to us, Drew is as normal as any other kid. So, what do I write about? Any suggestions are welcome!
We did visit Nashville on Monday to see a hand specialist. He examined Drew’s hands and quizzed us on how Drew performs various functions. It all came to the same thing we’ve been hearing for nearly 3 years: no intervention is necessary as Drew is adapting well and let’s see what happens next year. When solely speaking of his hands, I think it’s great that surgical intervention isn’t necessary. Sure, the avoidance of anesthesiology, pain, and hassle of surgery is a win, but, really, how great is it that Drew has such significant “disabilities” yet surgery would provide no improvement and in some cases for Drew, be a hinderance? It just speaks volumes to how strong Drew is.
I have two immediate thoughts that I would like to share at this point: my use of quotations around “disabilities” and a frustrating experience at I had at Walmart one day last week.
First, let me start with the frustrating experience. I let Drew walk into Walmart with me as opposed to me carrying him. Not soon after we walked in the door, an elderly gentleman approached me and asked me a genius question, “Was he born like that?” My immediate thought was, “No, I purchased him at a discount store and there was some assembly required and I’ve been wondering what those extra pieces were for.” But, I forgave him for such a silly question. He observed Drew as Drew was “hopping” around and the man claimed, “Poor thing.” WTF? Poor thing?!? What EXACTLY about him do you pity? That he’s so incredibly happy? That he’s so incredibly strong? That he’s overcome such significant physical challenges to do pretty much anything that he wants to do? Argh! He doesn’t need your pity. He’s not a poor thing and how dare you think he’s “broken” or condemned to live a miserable empty life.
Which brings me to my other thought. Drew has “disabilities.” It’s awkward for me to say because when you think of being disabled, you think of being unable to do something. But, there’s really not much of anything that Drew can’t do. He’s independent enough to go from room to room or place to place on his own. He can feed himself. He can speak clearly and thoughtfully. He can swim…without floaties…without instructions or assistance for Pete’s sake! He’s not disabled. He is enabled.
It got me to thinking how Drew does things a little more special than we do. Such as “walking.” Everybody should be pretty familiar with Drew’s “booty scoot.” It’s adorable. And, as excited as I will be if Drew ever does get to walk on his two legs, I’m going to miss his “booty scoot.”
Drew uses his left foot to prop things up as one would normally use their left hand. This is helpful for him when he’s drinking from a cup, removing a top from a bottle, pushing a button, manipulating an object, etc. Sometimes, he even picks stuff up with his feet.
Drew uses his ring finger to point or gesture. He also uses his ring finger and sometimes his middle finger to press buttons. He uses his middle finger and ring finger kind of like a claw to grab small items. He picks his nose with his index finger. (Funny first thought when I saw his arms for the first time: “well, at least he won’t pick his nose!”) He doesn’t use his thumbs for anything. Since he has no radius bone to which the muscles and tendons attach his thumb, he doesn’t have a lot of movement. Tuck your thumb into your palm as if you are indicating the number 4 with your remaining fingers and that is how his hand naturally formed and generally goes unused.