To say this has been a whirlwind week would be an understatement of massive proportions.
They say you see a person's true colors when the chips are down. They also say everyone handles grief/bad news in a different way. So here I sit, 4.5 days after the news of my son's health hit. I have cried, I couldn't work for a day. I have arranged specialists, AFO refittings, change in focus of therapies, starting the application for SS disability benefits for him, am booking an EEG for a baseline, found a neurologist that specializes in Angelman, found a place to buy merchandise that profits Angelman's research, read articles, talked to friends, and consoled family as they cried. All while working, taking care of G and not really sleeping or eating.
4.5 days out and I feel wrong if I cry. My anxiety is cruelly kicking me when I am down, every night from the time the kids fall asleep until one or both wake up. Alone is really bad for me. What I wouldn't give for an adult to talk to in the evening. I gave up one of my best friend's, nicotine, almost a year ago. Good thing? Jury's still out on that as far as my sanity goes (I obviously know the health repercussions or I wouldn't have quit).
Through this process I got divorced, found some friends, lost others, found a new support family in the Angelman community (who I need to get together with stat) and found that I don't know if life will ever have that shiny new beauty again. I am forever changed by this. Both positively and kinda dimly. I am no longer naive and blindly hopeful. My sweet baby, so unfair. Yet, this is all he knows. This is Will's world and it is SO much happier in Will's world as anyone who knows someone with Angelman's will tell you. Without him I would not be able to keep my head up, kinda sad huh? But it is for him and his sister that I do every single thing that I do.
I am trying to move forward, to lick my wounds and keep my head up. I will tell his story from nearly minute one of his coming to be later. It is not even 7 am and I have been up three hours. Sleep forsakes me again - too much to do, can sleep when I am dead. My angel needs me now ;-)