I received another one of those emails. I’m talking about emails that come from someone who knows me and who, because of distance or busy schedules, keeps up with my life primarily through reading this blog. Such emails teach me that readers of this blog see me as a stressed-out, sleep-deprived robot obsessed with her son’s recovery. Maybe not quite that dramatic—but close. This email came from a family friend in Germany. I’m going to apologize now, in advance, to that friend about the poor state of my German-English translation skills, and then translate nonetheless. The email states, in part:

So now and then I read your blog about autism, what you write about yourself, how tired you are. I know the way your days go, and I ask myself how long you can endure this stress. You have taken very, very much upon yourself. “I do everything to make my child healthy.” I know, also, your perfectionism. I’m going to render a diagnosis from afar: burnout. You know I’m no psychiatrist, just a woman who knows what exhaustion feels like. In Germany you’d be sent off to mother-and-child Kur. I don’t want to give you advice, just the benefit of my experience: Let go of some of your perfectionism, and maybe loosen up some of the deadlines. Just do the best, not the absolute best.

[Sigh.]

Here’s the deal: This blog is all about autism, my son’s recovery, and the work entailed in that recovery, because… well, because this is a blog about my son’s recovery from autism. It is not a blog about my life. Martin’s recovery occupies a huge chunk of my time, as it has for the past four years. Martin’s recovery, however, is not my whole life. If I were to write a blog about my life (my fabulous, glamorous, ceaselessly fascinating life!), then my readers would know that, in the past seven days, I did the following:

• Attended a wine-and-food-tasting fundraiser for Martin’s school, at which I fielded many, many text messages expressing anger that I was not watching Game 4 of the Rangers–Penguins series, texts like, “A fundraiser? Are you kidding? Write a check, get out of there, and find a television”;

• Attended a fundraiser for ovarian cancer research, before which I discovered that the dress I wanted to wear, which I had purchased at a boutique located more than two hours from home, still had the security tag attached, meaning that I had to beg local stores, dress and receipt in hand, until I found a clerk with the correct machine to remove that particular tag;

• Attended a fundraiser for our town’s parent resource center, and left early, accompanied by Adrian, to drive to our favorite bar and watch Game 5 of the Rangers-Penguins series;

• Watched at least one game apiece in the Capitals–Islanders series, the Blues–Wild series, the Lightning–Red Wings series, the Canadiens–Senators series, and the Predators–Blackhawks series;

• Re-watched, the afternoon following the live event, Game 5 of the Rangers-Penguins series, while texting with my cousin, who was also re-watching Game 5, about what losers we are for re-watching a hockey game just to relive the glory of the Rangers’ win;

• Planted the early green leafy vegetables, including kale and arugula and spinach, in my garden boxes, “assisted” by Martin, and repotted Easter lilies from church;

• Had dinner with Adrian and Martin at a new restaurant, where the server complimented me and Adrian on our son’s excellent table manners (squee!);

• Rode my bicycle eight miles, round-trip, to Weight Watchers to find out that I gained 1.7 pounds last week, whereupon I cursed all those fundraisers and devised a new motto, “Wine is for the weekends”;

• Enjoyed a Monday-evening dinner with the other moms from Martin’s playgroup and completely disregarded my new motto; and

• Worked, a lot, at my flex-time legal job.

Sure, I also spent hours upon hours in the kitchen, making cauliflower tortillas, walnut taco filling, veggie meatballs, bone broth, fermented coconut water, garlic fish marinade, almond-zucchini muffins, a new cookie concoction I devised from sprouted buckwheat and coconut. (You guessed it: Most cooking happened while hockey played on the television.) I escorted Martin to piano lesson and gymnastics, emailed with his biomed doctor, organized supplements, got him measured for new orthotics, and completed daily vision exercises.

I did the autism stuff, and I did other stuff. I had a life.

For the most part, I’m well-rested these days, along with optimistic for Martin’s recovery, content to be lawyering (a little) again, and—dare I say it?—happy.

I’d write more about my everyday non-autism-related life, but I’m not sure my readers could stand the excitement. So I’ll stick to writing about autism recovery, and hope you’ll trust that, indeed, there is more to me.

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.

Time for another confession.

Here goes:

When I’m traveling with Martin, I pre-board airplanes.

It is absolutely and wholly unnecessary for me and Martin to pre-board. Martin is fine waiting in a slow procession down the aisle. He settles quickly, and once handed an iPad and earphones, utters hardly a peep in flight. Although he used to get agitated by sitting next to other folks, and sometimes delay the boarding process while I negotiated to get him comfortable, that anxiety has more or less passed. We do not need to pre-board.

Nevertheless, we do. I tell the gate agent, “Would it be okay if we pre-board? My son has autism, and it’s easier if we enter an empty airplane.” I speak quietly, so that Martin can’t hear me; he doesn’t know what autism is, or that he has it. I imagine maybe the gate agent thinks I speak quietly because I don’t want the other passengers to know my son has autism.

Ha! fooled you! I’m probably never going to see these people after this flight. Who cares what they know? In fact, they should all hear that Martin has autism, and see how well he’s doing. Biomed evangelism.

Technically, I’m not lying. My son does have autism, and it is easier to enter an empty airplane. I mean, who doesn’t like to get on first? There’s ample space for our carry-on bags. We have time to arrange our little nests with iPads and laptop and water bottle and snacks. I have a few minutes to pray, as is my habit before flying.

I wonder what I would do if a gate agent asked, “Is that really necessary?” I wouldn’t lie outright. Probably I’d have to respond something like, “Necessary? Well, no. It isn’t necessary. But it sure is easier.” Then I’d smile, and probably be allowed to get on first.

I do ask myself whether my requesting consideration might make travel more difficult for families who really need it. If I ask for pre-boarding and the gate agent watches my calm, chatty boy board without issue, will s/he be more likely to refuse future requests? As more and more children are diagnosed with ASD, hyperactivity, sensory processing issues, and obsessive-compulsive disorders, am I contributing to an indifferent attitude of, “Yeah, yeah. Everyone’s got a sob story”? (Someone actually said that once, to a fellow ASD mom I know, as she tried to explain why her son needed to get in the pool even though they arrived late for swim lessons.) One indicator of my ambivalence at the airport is that I do not ask to pre-board if any child in the waiting area appears higher-need than Martin. If I see a caregiver dealing with bolting, or meltdowns, or overt anxiety, I’m going to let that group take the special privileges. All the special privileges. Then I’m going to make them think I’m weird as I hover close by, looking for ways I might assist.

Why do I request to pre-board airplanes at all? I suppose I do so because autism is a pain in the ass, and autism recovery is this overwhelming process, and my family has to fight constantly, has to fight school boards and insurance companies and even doctors just to receive services to help Martin, and I figure that, once in a while, in this one little instance, the world can do us a favor. It is what it is.

And of course, no gate agent ever has challenged me. I’ve daydreamed that “autism” could be a magic word. Sometimes, voila! When Martin and I flew overnight to South America in February, our assigned seats were across the aisle from each other. As I waited in line to talk to the gate agent at JFK, I heard her tell the passengers before me that the flight was full, and that no seat changes were possible. She told me the same thing, and added that, when it comes to traveling with family members, being seated across the aisle from each other is considered being seated together. I leaned across the counter and said quietly, “My son has autism.” Oh? The agent immediately took our boarding passes and started typing into her computer. A minute later she said, “It looks like I can get you seats directly next to each other, after all,” and handed me new boarding passes, 22 rows forward from our original assignments. They were “economy plus” seats, she explained, but we would not be charged the extra fee.

“Thank you so much. You’re very kind,” I said. “One more thing—would you mind if we pre-board?”

Martin, rock climbing this week. Honestly, he’s fine in the air. (Wink and nod.)