I have this hope in me that, perhaps, this reminder I now wear continually, will help me in those all too frequent times of struggle.
But this led me to another question...what defines a "miracle"? Will I only be satisfied if the "miracle" is a complete, instantaneous, genetic reengineering of my genetic code with new airways, vertebrae, and connective tissue? Well, of course, who in my position wouldn't be satisfied that? But maybe it isn't just about that, and maybe it isn't just about me. (*shock* *faint*) I know, what a concept, right? It's so easy to overlook the miracles that God does for me everyday. The fact that he's given me a spouse, partner, best friend to walk with me tirelessly through all of this and who, for some unknown reason, continues to love be despite all of this, is a miracle. The fact that's He's given me a community of friends who have really become family and who continue to support me, believe in me, and be there for me, is a miracle. The fact that I'm writing this from the porch of an amazing house in North Carolina on the beach on a vacation that was a complete gift to us from some of those friends just so we could have a break, is a miracle. The fact that I have a top medical team from Anne to my doctors at Harvard, and that I have such favor with them, is a miracle. The fact the God is connecting me up with another person who's gone through similar struggles due to EDS is a miracle. The fact that He's given me strength, moment by moment, at times, just to stay in this life during this time, is a miracle. The fact that time after time, when I should have to wait months or even a year to see a doctor, he gets me in in literally days or weeks, is a miracle.
I guess it comes down to what CS Lewis said at the beginning of his book "Miracles". (my paraphrased version). Those who don't believe in miracles will never see one...they'll always attempt to explain away any happening that's unusual as a "trick of the light" or a simple "coincidence". But those who are looking for and expecting miracles WILL see them and won't be disappointed. So, I want to start looking for and seeing the miracles He does for me on such a frequent basis. I know that, in some sense, the "Pollyanna" concept is a flawed one in terms of expecting a perfect almost "princess like" life. But I don't think that was really what was going on in that book. She was taking otherwise difficult situations and finding ways too see the good in them and for me, I think I need to go back to seeing the good more. I mean, it isn't as though I'm not trying to do that already, but maybe this renewed hope will be a positive start.
I don't expect to not have struggles with all of this. I don't expect to not have to adjust my life, my thinking, my expectations of myself right now to match what I'm going through. I don't expect to not have to be "gentle" with myself (a concept I find MOST difficult). But, if I can make those adjustments right now, with His help, then that's a miracle. If I come to a time later when I can become more like my "old self" then that's a miracle. And, if I can find a way to look for a "new self" to become, instead of mourning the "old self" that I can no longer find...then that is also a true miracle.
This is my aspiration. I certainly don't expect to do it perfectly. And if I can come to that realization and truly incorporate into who I am, that will be an absolutely amazing miracle.
So, now, I look down on my wrist and remember to "expect a miracle". Because, each moment holds that possibility and "suddenly" can happen in an instant and everything can change.