Thursday, October 15, 2009

31 for 21: The Other Shoe Has Dropped

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.



  1. Oh, Karyn, I am sorry to hear this. The health issues are so much harder to face than the actual Ds. I am glad that you have a diagnosis now, though, and can get Quinn the help she needs. {hugs} ~Courtney

  2. Karyn, I just don't even know what to say. She's still Quinny, the same little girl you knew and loved before the dx. We'll all still be here to love and support your family. I haven't been on downsyn for a bit, but I strongly suggest you seek out Amy Armstrong, Larkin's mom. Her blog is and email She has a wealth of information on this. [[HUGS]] to you friend.

  3. We know a family whose daughter had infantile seizures - and is now medicated & seizure free and thriving (she turned 2 this summer). If you want to talk to them, I can contact them? They're in WI.

    Quinn is so beautiful, I love checking in on her.

  4. Oh, Karyn, I'm just devastated to hear this. I know Amy (Larkin's mom) has contacted you and she is such a wonderful resource. Big hugs.