My pity party from yesterday morning is over. I guess I need a good cry and lashing out every once in awhile, because I’m back to feeling motivated and ready to kick ass against whatever is going on with Hannah.
There are so many things I need right now to deal with this, and it is hard finding what I need…mostly answers. But here they are…
1. Alternatives to NPC and Gaucher’s. Even though two are the ones we are waiting testing on, what if these come back negative? I’ve tried twice to get alternative possibilities from our genetics doctor, and he has yet to give me anything. I realize that if I know what the alternatives could be, then I could focus less and stop dwelling as much on NPC, you know? What else could it be?
2. If Gaucher’s is unlikely, why is it still on the table? I understand from the Gaucher’s specialist that I emailed that her 50% to 55% enzyme level activity is too high for it to be Gaucher’s disease, but could Hannah be a fluke? Or is just testing it to rule it out along with the NPC test a “just to do it” thing and I shouldn’t get my hopes up (isn’t it sad that I would prefer gaucher’s disease over NPC?)
3. Finding a support group. Damn, it is so hard trying to find a support group around here for parents (and even siblings) of chronically or terminally ill children, doesn’t have to be disease specific. Even online. I’ve met some WONDERFUL parents of kids with NPC recently, and they have been a godsend. Truly have. Just being able to talk about it, hear their stories, just be able to reach out to someone who understands. I’ve sent emails to the Ronald McDonald house out here, and I’m going to call TCH downtown next week to see if they have anything.
4. Coming up with a fighting game plan. Once we get the diagnosis for Hannah, and if it turns out to be NPC, Gaucher’s, or something else life-threatening, I want to start fighting right out of the gate, as you already know. But coming up with a solid plan is so difficult. I have so many ideas, but where do I start?
This is just the beginning…there are so many more, but I just looked at the clock and realized I have to jump in the shower for Big Boy E’s Thanksgiving party at school. See, that is another thing. What do I say when people ask “how is the baby?” Most people here don’t know what is going on with her. How do I respond?
But life is still going…off to put my son, my second grader, in the spotlight now. It is hard when I am so consumed with Hannah lately, but Daddy and I are going to really start making a conscious effort to focus more attention on the other kids as well. (Yep, we had a big talk about that last night).
Latest Comments