My beautiful girl will be two in five days. She has no heart issues, no duodenal atresia, none of that. We have been lucky. But I have been perpetually waiting for the other shoe to drop and now it has. She has infantile spasms. My baby girl has been seizuring right before my very eyes for who knows how long. No wonder she zones out. No wonder she doesn't crawl. No wonder she seems so very behind other kids with DS her age. I tried to ignore that there would be any problem or negative outcome to this neurology appointment, but here it is - hitting me right in the face. Can you imagine what this is like for her day after day? She has a seizure, nobody can see it, but internally it has been impacting her. I have pain in my heart like you wouldn't believe. The shoe has dropped. Boy has it dropped. I honest to God thought it was going to be autism (but maybe it still is)because of how she zones out and just doesn't respond. Maybe this is the answer to what she has been doing. Or maybe it is not. There could be a third shoe too. I just don't know. I really don't have anything profound to say or do except cry tears as I type this. Then I have to suck this up and go on with my day - pretty much like how it was when we received the DS dx. Cry for a bit and then go off and attend to other people's problems. It is what it is. Sorry to be so uninspiring today. I will get back to that later. Because my post is so depressing, I need to counter that with something happy. Please check out this video about dancers with DS. I know it helped me this morning when I watched it.
19 hours ago