Even now, even with all the progress we’ve made, even with Martin’s upcoming transfer to general education, even with me being able to work part-time outside the home, even when friends and family pin accolades on Martin and acclaim how far he’s come, even with the confidence that he will be able to love independently—
Even now, there are times when I fear my son’s illness still could get the better of me.
For more than a month, Martin has been sleeping poorly. Not as poorly as in the bad old days, when he needed physical restraint to fall asleep and rarely managed more than a few hours consecutively. But his silliness and hyperactivity (reactions to his Lyme protocol?) often steal two hours or more before he can settle, and his anxiety (protocol, combined with life changes like a new school?) disturbs his sleep. The day after such nights, he’s tired, which leads to more silliness and hyperactivity and anxiety, which lead to more sleepless bedtimes, and so goes the cycle.
It’s 5:04 a.m. I’ve been awake since 3:22 a.m., and so has Martin. Initially I hoped he would go to the bathroom and back to bed. Instead, he giggled and complained and snuck into my and Adrian’s room. At one point I found him curled up on the throw rug next to our bed; when confronted, he declared himself unable to rest anywhere else. Fifteen minutes ago, I gave him activated charcoal, to absorb whatever might be causing this vigil. Five minutes ago, I shut the master bedroom door (I’ve moved to the kitchen, to write) so that maybe Adrian can be the family member who gets to sleep till dawn.
Today, beginning in half an hour, I need to make breakfast and Martin’s lunch and handle morning supplements; drive Martin to a doctor appointment for his medical exemption for vaccines; drop him at school; edit a complaint and a legal memo; coordinate drafts of joint prosecution agreements; lead a call with several attorneys; schedule three separate home repairs; continue working through my checklist of activities to prepare Martin for his new school; repair Martin’s trombone before his music instructor arrives; conjure a grain-free organic dinner; help Martin with homework and exercises; repeat the increasingly futile bedtime routine; and use the after-bedtime slot to make Adrian’s lunch and Martin’s “goldfish” snacks.
Though I no longer handle sleeplessness well, I will do all this on less than five hours’ sleep, and then I will hope for a better night, because tomorrow I need to take Martin to Chicago for an optometrist appointment.
These are the times when I trip into a pile of doubt and fear, and when I wonder about just giving up. These are the times when I have to remind myself how much better I have life than other moms with ASD kids. These are the times when I dig deep for every morsel of scrappy resourcefulness I have.
It’s past dawn now, and Martin is in the family room, insisting that daylight means he can get up and watch television.
I’m going to go take care of the trombone. I’m from rural Upstate, so by my reckoning duct tape and ingenuity ought to do the trick.