I can’t help but think about the Cowardly Lion ala “The Wizard of Oz” when it comes to Drew’s surgical future. The thought of Drew walking is eclipsed by the pain, work, and uncertainty ahead for us. Messages of support and positive thinkers are helpful now, but they won’t mean much in the moments as hospital staff carry away my baby to perform a yet unknown set of procedures that have life-changing effects, good or bad.
It’s scary to admit that I have cold feet, especially because we are so early in the process. But every time I see Drew use his feet in an adaptable way, or recognize that he’s
perfectly capable of keeping up with his peers, or see the testimony of another mother caring for her child post-surgery, I question what is right for Drew. I’m conflicted even putting these thoughts in black-and-white because this is a huge decision and I shouldn’t have any trepidation, but I am human, and not only that but a mother.
Drew has shown a lot of interest lately in walking – from “walking” on his own to school to walking on his knees. Sure, he could use a wheelchair when he gets older, but from my posts depicting Drew as refusing to being carried and instead insisting that he tread through water, gravel and terrain to get to where ever it is we are going at the time, he may also ignore the wheelchair. And, Drew is certainly not going to be able to do the bum shuffle forever. Shouldn’t I do whatever it takes to give Drew the tools and opportunities available to him?
But, should it be so hard to find medical support if this was the right thing to do? How many times do I have to hear, “no” before I appreciate that that is the right answer? I guess this isn’t an applicable question as we’ve never heard a flat-out “no” only uncertainty and debate leaving an opening for a “yes.”
Beyond even deciding to do the surgery, we have the post-surgery adventures to look forward to (or dread in all cases other than the actual moment Drew walks on his feet for the first time.) Anybody who has spent 10 minutes around Drew recognizes how active and independent he is. How will he handle being constrained to casts, bracing, etc.? How will we manage? Whether I like it or not, Nathan and I will get a little time off but we will both be forced to go back to work sometime. Will it all be worth it?
I’ve read this post over and over and I’m just not happy with it because it sounds so non-sensical to me, but I guess that’s how I feel in my head – so many questions, possibilities, ideas, etc. I just can’t make sense of it.
I guess it’s too early to tell. We have an appointment in Nashville tomorrow afternoon and hopefully within the next several weeks, we’ll be going to St. Louis to visit a colleague of our Vandy dr. And, if that doesn’t pan out, or maybe if it does and we think it might help to get yet another opinion, I’ve heard of a dr. in Florida that has a lot of experience with TAR Syndrome. Who knows.