Saturday, October 12, 2013

You're Getting Very Sleepy...

Sick is weird. Hazy and depressing and self indulgent. Sleep is my favorite cure.
This sick isn't long-term, though. It feels flighty and itching to move out already. But it keeps coming back to the apartment to get that one last thing it forgot...

I slept as much as I could these past 24 hours and now it's all taking care of shit again until I can go back to bed tonight and sleeeeeeep some more.

Lincoln doesn't feel good, either. He's going on like a solid week of a nagging, thoughtless bitch of a cold that couldn't care less how much it is hampering with a small boy who has a hard enough time expressing himself when he's well, forget about when he's under the weather.

He won't knowingly take medication. He can't blow his nose. His gag reflex is nonexistent and he hurls vomit like one of those crazy sprinkler head toys we had when I was a kid... what the hell was that thing called? Anyway, vomit everywhere even if it's just a little bit.

And while I understand that many of your children suffer from these same inadequacies, internet people, I don't give a shit today.

Today I am reminded of all the sleeps I've ever taken to make a sick go away. And it usually works. Usually.

But that time, about 3.5 years ago when we found out Lincoln had Fragile X, sleep was no gift of wellness. Sleep was hell.

Sweet man would cry in his sleep and wake up crying and go to sleep crying. I dreamt. Dreamt of a million sons that weren't mine. Just hell.

Last night during my marathon of get-well-sleep I dreamt of a boy. An amazing magical kid who was so alive! And capable! He was navigating me through an amazing landscape that was part 5Pointz Brooklyn, part Arizona desert, part suburbia, part sic-fi city. And he knew everything! Was telling me whatever there was to know about whatever we walked by and he was confident and surefooted and strong.

Now I know what you're all thinking, you lovely looking on the bright siders. But that's not the feeling I woke up with.

I woke up with dread. And sadness. And anger. And a real big hankering to just go back to sleep.

Tuesday, October 1, 2013

Daddy Knows Best

After hot husband lit a fire and poured me another glass of wine, he told me what the littlest elf said to him as he tucked her into bed:

"Dad, will I always have Fragile X?"
"Yup. I mean, unless there is a cure for it someday."
"Good." She says. "I like being different."

Ok. Ok, ok, ok.

Up until very, very recently, PJ denied FXS as her reality. And as she's accepted it, she's only spoken to me about it and only to say that yes, she knows she has it, blah, blah, blah.

My sweetie! Opening up! Talking to her dad and telling him how good it feels to not be like everyone else.

How I wish she said it to me! I'm so jealous! I want to crawl into his head and snuggle down with that nugget! Lucky bastard.