You know those awesome moments when you realize you are not invisible? Many feelings well articulated in this story.
I know many of us already have older children (maybe that’s why we’ve mellowed and find each other!). Rachel will be 21 in several months….
My daughter was on ACTH first, it was dangerous and didn’t work. If it did for you, great, but in IMHO our kids are the last thing on the priority list. And frankly if you want to blame the free market or the drug companies, you are not admitting that they are married to the politicians and the government agencies.
This (Infantile Spasms/West Syndrome and Lennox-Gastaut Syndrome) is the epilepsy that attacked my baby so long ago. I wouldn’t care to take away the autism, or the intellectual challenges, I love Rachel for just being Rachel.
I would, however, take away the epilepsy in a second! I have never spent a majority of my life asking why, but somehow a genetic mutation gives makes me feel some sense of closure. If they could tell me that was the answer, I could take it and walk away and never think about it again. She was simply made that way, and she’s the perfect Rachel!