The expression is “Caught Between a Rock and a Hard Place.”
The reality is choosing between two sucky options.
One of the worst parts of being Charlie’s mom is the decisions. I attend most doctor and therapy appointments alone. I am the researcher of therapies, diagnoses, and drugs–I’ve dragged my baby to Canada, I’ve found an off-the-wall therapy offered in the French Quarter, I’ve changed medications, and spoken up time and time again in doctor’s offices. I am the one who spends sometimes hours on the computer trying to find the right answers and digging when the answers I find are too pat.
But sometimes there’s no great option–there’s no clear choice–but there’s still a decision to be made.
And a jury waiting to pass judgment on your decision.
Charlie is getting Botox in his hamstrings tomorrow. It’s a procedure that his doctor (physiatrist) recommended over a year ago, but due to insurance denials, we’re just now moving forward with it. It is not the easiest decision I’ve ever made, but I do feel that they’ve gotten worse with a recent growth spurt. I could do nothing, but I’m afraid of the stress being put on his hips. Too much stress can result in dislocation and a fast-track to orthopedic surgery. A doctor we know personally has suggested that Botox could potentially buy us years of not having to worry about that. I also don’t like the other option we’ve been given (neither does the doctor) of taking an oral muscle relaxer.
Charlie has been evaluated twice for this procedure. I have covered every possible angle in discussion with the doctor and other parents–pain, possible results, activity after, potential side effects and on and on. I’ve also talked with other doctors I know and several therapists. I’ve read the blog posts of other parents and re-read comments on this blog about their experiences with Botox.
I have done my homework.
But in the back of mind is the worry–if something goes wrong–it will be all my fault. Last year when I decided that we needed to try a new seizure medication for Charlie, the responsibility was mine. More than once I played worst-case scenarios in my head–a massive seizure. Or worse. Again, it would have been my fault.
Changing medications was one of the best decisions I’ve made for Charlie so far–the results were almost instantaneous–he’s more alert, more interested in his environment, more aware of what’s going on around him, and he spends a lot more time looking around and taking everything in. Also, we saw absolutely no change in seizure activity.
It was a good decision and I’m glad we went through with it. I hope the Botox decision goes the same way–gives Charlie some relief from muscle tightness that sometimes crops up at night, enables him to strengthen his legs more, and keeps us off the list for major surgery at this time. I could be wrong–it could be a complete disaster and I know that.
I’m hoping for the best, though. Hoping that injecting toxins into my child’s body is the right choice in the long-run even though it’s hard to do in the short term. And I hope my family understands that I’m doing my best–not all the decisions are easy ones.