Some people are uncomfortable talking about Noah (sometimes I think it'd be helpful to take a class: Doctor Speak 101 or Nerves of Steal 460) or seeing him suffer. It's tough, I know that. I watch it all day long. Watch him suffer and squirm through seizures. I watch him cry and howl and I try to hold him as tightly as I can to comfort him but it doesn't help really. He just looks terrified. His eyes get so big and he screams. It's awful.
Now I understand why his arms and legs get so stiff and won't bend. Duh! Cerebral Palsy. I thought maybe he didn't want to change his clothes, do PT, or be held. Now I know it's totally involuntary and he just may be as frustrated as I about the whole thing. So if he's not seizing he's battling his muscles for control of which he pretty much has none.
I'm angry today. I'm angry that I allowed Noah to get vaccinated. I'm angry that I allowed a surgeon to operate on Noah and he lost so much blood it caused irreparable brain damage.
As I go through the stages of grief (I do mourn for the loss of a life I had planned for Noah; a great life full of "typical" things and "typical" dreams), I think I'm stuck on a few.
I'm somewhere between denial ("you never know, things could still turn out okay"), anger("why us? it's not fair to punish such an innocent soul!"), and bargaining ("maybe if we can just start that treatment, everything will turn out okay.").
But today (and yesterday) I'm just angry.