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.
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Janel, I don’t know what I would do in your shoes. I don’t know Drew except through what you share with us in this blog and on FB. I can only imagine that I would pray really hard for the right answer. The only thing that really comes to mind is my wondering in the future, what if the surgery was done? The payoff could give Drew an easier time with mobility. Even though it would be so painful to see him go through that, I would always wonder down the road if I didn’t do it, ya know? I am praying for you, Nathan, and of course, Drew through this time of exploration.
You say you have read this over and over and ….it sounds so non-sensical. I read it once and it made perfect sense. Clear as a bell. This is tough. I’ve never been through anything so tough (and I am old). I am aware of people who emerge on the other side of trying times with a rare sort of wisdom that carries them gracefully through the rest of the little things that seem to bring we mortals to our knees. You’re going to need a uniform with a cape when this is done. And a name befitting a superhero. But until the uncertainty subsides, it’s likely to suck.
Hey Janel. Thanks for stopping by our blog, and also for sharing Drew’s story. It sounds like you all have been through a lot, but that your wonderful son inspires and amazes you every day.
Our daughter is also being treated at Vandy. I wonder if we have the same ortho? Does his last name begin with S?
Anyway, best of luck with your appointment today, and your decision. I’ll be thinking about you.
My heart aches when I think of the post surgery difficulties Drew and we all have to face (especially you 3 kids), you are such a strong family unit and GOD will never give any of you (us) more than we can handle. I pray for the perfect doctor to do Drew’s procedure, should that be the answer to our prayers. Knowing how determined he is to walk, run, play with other kids it only makes sense to leave no stone unturned. I would definitely get an appointment with the doctor in Fla., maybe even if the doctor in St. Louis is for it. just for yes, another opinion, with a TAR experienced doctor. I love the beauty of you 3, the way you work, love, live your lives so inspired and deliberately for each other. Love you so much, Mom/YaYa GOD BLESS my babies!!!