I find myself dragging my feet. There appointments that need to be made, decisions about treatment and/or surgery loom in the future. And… I simply don’t want to do it. I know it needs to be done eventually and probably the longer I wait the harder they will be… Bu
T I’m still reluctant. I know to much. I remember too much. No matter how good the ultimate outcome is, surgery basically sucks. But then I whine about the fact that I can’t see straight in front if me. Which also sucks. Sko what’s the tipping point? When does the desire outweigh the fear? I don’t know.
One of my good friends with Moebius syndrome had facial surgery last week as a middle-aged adult. It was something he’d been thinking about and decided the time was right to go ahead with it. I have to say I really like that medical advances have made this possible, and that the window of “doing something” is much more open.
I’m taking a wait and see approach with things. I was too traumatized by prior surgeries to think about any medical interventions as a pre-teen when surgery first became an option. It literally gave me anxiety attacks just thinking about it. And by the time I was older, I didn’t think it would make much of a difference, I would still have a smile that didn’t look completely normal, why not just keep it at my natural one? Who knows if I’d had less movement what I would have thought. It might have been much different.
And now? I’m glad I have options available to me and that if I’m ever not happy with how I look as I get older (what does Moebius do to aging, anyway?) I’ll have options at my disposal to feel better about myself if it ever comes to that. I’m excited that medicine and surgery have evolved enough that this is a reasonable approach to take, even though I have no idea if I will ever decide to use it. Who knows what the future will bring?
I was reading about a BBC show called Children’s Craniofacial Surgery featuring a boy with Moebius syndrome (which, unfortunately, we don’t get in the US – I just e-mailed BBC America to ask if it could be made available to the US streaming) and I really liked how they worded this:
“Harry is older, and has Moebius syndrome, giving him paralysis of the facial muscles. However cheerful he feels, he can’t smile. His parents left the choice of surgery up to him, and now he’s elected to have a major operation called ‘smile surgery’ to enable him to smile for the first time.”
I like that his parents embraced the idea of having surgery available, but up to him. It’s a hard thing to do, I presume, when the recommended age for surgery is so young… I’m sure many four-year-olds grasp the implications, but I’m afraid some do not. And coming from the point of view of someone who was very traumatized by surgeries as a young child, I am hesitant to say that this is the best course of action to take. It just seems wiser to wait until the child is mature enough to evaluate everything. I don’t know if this is the popular opinion in the Moebius community or not, but it is what it is. I’m definitely not by any means anti-surgery, I’m just in favor of waiting a bit and having the person with Moebius be able to evaluate for themselves the pros and risks of it (in most cases, of course there are exceptions to the rule).