So it’s been a few days since I’ve written, but there haven’t been any dire missing medication, mad at the world, hating Loeys-Dietz Syndrome stories to tell. Oh, I still hate Loeys-Dietz Syndrome just as much as I did a week ago. I just have no new stories about said hatred.
But I guess that is good news. I’m waiting on the doctor to confirm the appointment I’ve made for E to have an echo and check and make sure there are no changes. Ugh…..I started this blog as a way to redefine life away from doctor appointments, medical tests, and all the like and yet, here we are talking about it. No matter how hard we try, it feels as though it fights to always find its way front and center of our lives. And some days it wins. But, I suppose some days we win.
The reality is this connective tissue disorder is not my husband and my son’s identity. It is not who they are. However, it is a part of them….and a part of their identity. Not the whole, but a part. In fact, even though I don’t have it and my other son doesn’t have it, it’s still a part of who we are, too. Does that make any sense at all? A disorder that I do not even have still makes up a part of me by it’s all consuming nature in our family.
But I’m so glad that we are more than that syndrome.