You may or may not know that there is a nerve transplant surgery for people with Moebius Syndrome. It is done after the age of four.
I'm reading more and more posts on Facebook from moms asking about it, or getting it done for their young kids.
Scott and I decided a long time ago we would let Emma make the choice to get the surgery when she's older. However I am reading that
A) it is better done on young children for developmental reasons;
B) adults with Moebius commonly express regret that their parents had not had it done for them as children.
As you can imagine this has thrown my questioning nature into a frenzy.
Are the two 10-hour surgeries and recovery times worth it for a lifetime of feeling more whole.
I don't know that I even need to ask Emma what she would choose now, though if she said "no" could we even accept that given she's really not fully able to comprehend the impact of the decision.
And then there's the cost. There's a chance insurance would cover it, but if not... Maybe that would give us the answer.
As I consider the situation, if she was missing a limb or any other physical ability would we not pursue options to the nth degree? Is the ability to be accepted and expressive, maybe not even more crucial? We are social animals after all, is this a much bigger disability than we have tried to let it become.
Sure, we pray that she will love herself, have confidence and show others that God creates us to be unique. But I do not want to force her into that position, as an example of how we should rise above the physical, when I have no idea of the struggle that would be for her, for the rest of her life.
My mind is spinning, my heart is aching and my guilt-o-meter is frantic.
I'm not angry at God for any of this. I know he has reasons for allowing such things. But oh, how I wish I had a clear answer on how we should act in response, or not.
Puts some of the other parenting decisions in perspective.