I have this memory from years ago, autumn 2011 (or so). We still live in the City. It’s late, maybe 11:30 pm, and I’m in bed, in our tight City-style sleeping quarters, propped on pillows as Adrian slumbers beside me. I have my computer on my lap. We are less than a year into biomed. Martin’s sleep has improved, but we still have bad nights. There is a chance that by 1:00 or 2:00 am Martin will be awake, and will stay awake until 5:00 am or later. I should be sleeping. I should be exploiting every moment in which my eyes can be shut.
I’m not. Instead, in this memory, I’m keeping myself awake to write a post for this blog. It’s not a lone memory, either. It’s an amalgam of moments, dates, times. In those early days of recovering Martin, I managed amazing feats of strength. I worked nearly full-time, I spent five or six hours a day creating menus and procuring and preparing food, I tended to Martin throughout the night, I got by on three or four hours’ sleep, I lost 39.8 pounds. (The 39.8 pounds I lost intentionally. Thank you, Weight Watchers.) And I blogged. What little rest wandered into my grasp, I forewent in order to write.
I’m not the only one. Every day, autism parents do what I’ve just described, and more. Every day, autism parents work, and wade through biomed with two, three, four kids, distant families, unsupportive co-parents, financial concerns that I’ve never faced. Every day, the community that I’ve come to know along this journey reminds me that my struggles, while monumental to me, are but stumbling blocks. I am so fortunate.
From that memory, of me, awake, pounding out blog posts on the near and far sides of midnight—from that memory, fast-forward to now. Martin, virtually without exception, sleeps through the night. I sleep, too. So much more than I used to. I’ve declared 2015 to be a year of taking care of me, and Proyecto Numero Uno is sleep. I’ve rearranged my schedule to make sure I sleep. I used to tuck Martin into bed and then begin chores: preparing Adrian’s and Martin’s lunches, straining broth, baking grain-free muffins, cleaning litter boxes. I’ve become hyper-vigilant about incorporating those chores into my day. Most weeknights I’m in bed by 9:30 pm, not long after Adrian gets home from the office, and asleep by 10:30, and not up until 5:45.
Yet I’m tired. Not bone-tired. Not like in the early days of Martin’s recovery, when I avoided sitting down during the day, because anytime I was off my feet I might fall asleep inadvertently. But tired. More tired that I should be (I think) when I’m getting between seven and eight hours’ sleep per night.
I have several theories on why I might be tired. I think it’s possible that, after years of laboring long hours for Martin’s recovery, and sleeping only when his restlessness allowed me to sleep, I’ve fatigued myself to the point that my own recovery will take more than a few months’ adequate rest. My body may still be readjusting to getting a full night’s sleep. I’ve read also about caregivers’ exhaustion. The situation with Martin is so much better, and easier, these days. Still, making sure his needs are met, completing the work that biomed and homeopathy and therapy require, and worrying about his future take their toll. On the other hand, maybe I’m more relaxed because I can see how well he’s doing. Maybe I’m no longer surfing adrenaline from 5:00 a.m. till midnight. And what if I just need more sleep than I once did? What if I need nine hours now? I was 38 when we started recovering Martin. Currently I’m pushing 43. Holy cow, 43! How much sleep do we middle-aged folks need?
Whatever the cause of my tiredness, here’s one effect: My evenings are gone. They’ve disappeared. Martin and I have been on vacation this week, at my parents’ home in Texas. I’m working, a few hours per day, at my new home-based legal job. Other than that, I’m not doing much. Taking Martin to the indoor playground. Lunching with girlfriends. Challenging my brothers (also visiting) to Scrabble. Losing to my mother at cribbage. Yet, my writing is stymied, because I get to writing in the evening, and then the desire is gone. I mean, the desire to do anything non-trivial is gone. I toy with a crossword puzzle, deal some cards, eat popcorn, search Texas cable fruitlessly for a New York Rangers game, go to bed.
It’s the same story back home in New York. Once Martin is in bed, I’m done. I don’t have any creativity or energy for writing. Even a simple leftover task like emptying the dishwasher seems to take twice as long as it once did.
Scheduling has become more important than ever, because what’s going to get done has to get done before Martin gets home from school. From the time he arrives until bedtime, we have afterschool activities (personal training, church kids’ club, piano lessons, gymnastics, playgroup), homework, detox bath or sauna, vision/integration exercises, and dinner. That means my day, for everything else, spans only from 8:00 am, when Martin boards the school bus, until 3:30 pm, when he arrives home (except Tuesdays, when I leave home at 2:00 pm to pick him up for church). Seven-and-a-half hours for gym, blogging, lawyering, household tasks, grocery shopping, and cooking. The one task I do try to manage at night is to jot down an outline for the next day, an attempt to make it all fit. Even if the outline doesn’t hold, at least I’ve got something to shoot for.
I miss the evenings, the productive evenings.
Epilogue: Of course, there are exceptions. Tuesdays and Thursdays I have help from a sitter. If the Rangers are playing in the Eastern or Central time zone, I don my #30 Henrik Lundqvist jersey, head to a local pub, set my laptop on the bar, and eat dinner while blogging and watching hockey. It’s kind of a tradition by now—“Ah, my sweetheart’s here,” says Jimmy the bartender, in brogue, when he sees me enter. “The Rangers play tonight, do they, love?” At the pub, with my Rangers, I’m in my blogging zone, disrupted only by the occasional drunk who just can’t accept that a chick alone in a bar watching hockey with a laptop actually wants to be left that way.