Monday, November 21, 2005

Never Too Late....

I guess I shoulda done this years ago, seeing how we don't live close to family, and the phone isn't as cheap ;) So here's my attempt to do online journaling.....Lord knows I can't seem to do the hand-written version.

Hate to start off on a bad note, but perhaps it's the reason why I need to do get my thoughts out....vent a little (stop having to repeat myself?).

So it's official: Michaela has LGS (Lennox Gastaut Syndrome). Not that we're surprised or anything-definately not. You can't have a child with uncontrollable seizures for 5 years and not expect them to drop this bomb at some time. But then again, who's ever ready to hear that your child's brain will degenerate into a big ball of seizure soup and there's nothing they can do about it?? Up until now, it's always been, "If we can just get the seizures under control, she'll do better," "When she has good control, she'll start talking better (walking, doing, etc)." Always hope, always striving, reaching, looking, researching, testing. Now....nothing. Just "quality of life." Interesting. I wonder if that also refers to mine.

Don't get me wrong. I'm not upset, really. For me, anyway. Devastated? I think that came and went when I held her during that first seizure. All my hopes and dreams for this child flew out the window into that cold morning air while she writhed and gurgled. Turned blue. Life changed then. And I think it probably does again now. No one is supposed to outlive their children. No one is supposed to change their child's diaper when they're 20. We were supposed to have this family early and then have time together when they all move out and get married when we're in our 40s---how cool that would've been.

I hate to sound like I'm complaining. Cuz honestly I'm not. Just musing. Just rambling. Life IS good, and that's why I named this blog what I did. I don't have anything to complain about. I still have her, and Chris and the others. But there's a part of me that just wants to run away from EPILEPSY. The part of me that wants my little girl to skip rope and ride a bike and put her hair in a ponytail. I'm so sick and tired of meds! How wonderful would it be to go to bed at night and not have to dose out medication. It's possible I won't know until I have a miracle or I've lost my oldest child......

Yet overall, things are pretty's pretty wonderful.


Kim said...

Oh Kelly, this is the most poignant post I've read in a long time. I'd like to put your blog under my "Patients of the Blogsophere" section.
Check out my blog and if you agree, I will link it.

I'm an ER nurse who wants to keep up with what patients think and what they experience. And I have seen patients with the same syndrome you describe.

That Girl said...

It's a tough thing - get all the support you can.

If you ever want to chat, let me know.

Big hugs!