You know one weird, kind of salvation-y thing about having a severely disabled child? No matter how crazy things get, how unrealistic the possibility of getting a super-special-needs nanny for a yoga class or Sunday night candlelight meditation or trip to the women-only spa in Lakeview, or the dozen other “me-time” things you hear other moms talking about at the park as you push your oversized kid on the baby swings parallel to a slightly better-rested, slightly less resentful, alien species? The revelation is that you don’t need them. After awhile, you’re better at living in the moment than a Buddhist monk, because you don’t have a choice. The days and nights blur into an endless stream of cleaning expelled food in various forms from various surfaces, reconnaissance missions for potentially chewable clothes, cords, books, writing utensils, rolls of tape, sweeping the landscape to ensure you’re still in the same room, moving locks on the outside doors so they’re too high for him to reach, moving them even higher; then, when he towers over you and there’s no higher place to put in another sliding lock with small jingle bells, perusing the internet for the best, yet most affordable, permanent tracking system. I went with a Road I.D., though I still struggle with the choice. He never takes off the bracelet, but there’s no GPS component.
Amy, Noah, girls, horses. By Adèle Phung.
It’s an ironic silver lining. Where other people with other tragedies can and do linger over the permutations of finding meaning, I didn’t have a single cell left in my brain for that kind of thing for a long, long time. I lived moment to moment, grateful for each one, mostly, but not really thinking much farther than the lunches that needed to be packed for the next day or two.
My first boss had a brother who had died of a sudden massive heart attack when he was only 46 years old. When I worked for her, she was already in her 50s. She reported that every birthday she’d celebrated after 46 felt like she was living on borrowed time, which, she said, was sort of a double-edged sword. On one hand, it made a person appreciate being alive. On the other, there was always a storm cloud on the horizon. Would this be the last year? Day? maybe tomorrow, or the day after that? Her brother, her family for that matter, didn’t have a genetic history, or significant risk factors. It was the unknown, not being able to assign blame to a specific lifestyle habit and therefore choose a different path, that contributed most to the shadow.
Noah en route. By Amy.
When my father died unexpectedly at 49, I had a sense of how young that was. As a kid, many of my friends had lost a grandparent, but no one my age had even started to consider that they’d bury a parent. Case in point, I’d saved every letter, thank-you note, even the gift tags from all my grandparents, acutely aware it could be the last memento I ever got. There they all were, all four of them in perfect health, at my father’s funeral. I hadn’t saved his things, not wanting to burden my young self with a half-century’s worth of papers to carry through life. I figured I’d wait until he was old to start that box. Barely a legal adult when he died, I really had no idea how fast a life can fly by.
This July 1, I turn 48. If I were my father, I’d have one year left. As it draws closer, it’s almost visible, an approaching storm cloud. It causes me to forget that I’m a superhero single autism mom, not the kind of person who sits idly by hoping I get lucky, hoping fate deals me a better hand. That ship sailed. I’m the kind of person who painstakingly creates the topography itself, then maps out a route as if I hadn’t just invented the entire landscape.
Noah and the lake. By Amy.
One of the things that still haunts me about the days right after my father’s death is that I discovered a book on his end table, next to his recliner, with a bookmark about halfway through. Who dies in the middle of a book? It seemed like one of the cruelest parts of the whole story. If I were writing my own ending, I’d plan better. I’d make a prioritized list of all the books I hadn’t read yet and a timetable for how to finish them in time to not die mid-chapter.
I mean because it seems like there are two choices: 1) Cry for the next twelve months about the randomness yet beauty of life, the universe, and everything (which would probably justify avoiding the Planetarium, even on free days), and then, if I make it past 49, live the rest of my life under that increasingly terrifying cloud. Or 2) Live my potentially last year ever so that if our genes match exactly, like they just, just might, I’m ready.
Amy and the city. By Adèle Phung.
I am inclined to choose the latter. My father, impossible as it seems given that he quit mid-book, was a planner. I am choosing to live ready for the end, and so far, things are on track. Here’s what I’d like to lock down in the next twelve months:
- I want my legacy to include that I had kids who valued local produce. It sounds trite, considering life, death, loss, the meaning of it all, the disabled older brother, and all that, but are our shopping habits anything if not a metaphor for how we live? Every week of every summer, I have had a reason why our family is too busy or overbooked or out of cash or whatever to get to the enormous Farmer’s Market that happens for four months, twice a week, one block – ONE BLOCK – from my house. I want them to think that the normal course of events includes walking to get vegetables from the farmers who grew them, then going home to make them into dinner – not just popping stuff from the freezer into the microwave. At least, not in the summer.
- I want them to have been forced by their mother to take piano lessons, or violin, or in some way have passed down the gift of music we were given as kids. It’s a thing we just haven’t gotten around to squeezing in. I want my kids to have more memories of reading and dance parties and picnics, less of watching Netflix while I clean the next room. Not that I’m cutting down on cleaning. I’m double-half German (both grandmothers), so that’s not going to happen. But if I knew I only had a year left to live, I’d find a way to make it into a Pine Sol dance party more often than not.
- I want to find a Christmas Eve babysitter from another religion, or one who isn’t going home for the holidays, although this would need to be due to logistical issues rather than some kind of bitter family drama, and sing one last midnight mass.
- In this scenario I will quiet my inner Ronald Reagan long enough to take out wads of cash from the ATM on the way to some of Chicago’s legendary (but absurdly overpriced) festivals. Taste of Chicago, Square Roots. It seems senseless to endure the winters here without at least a little bit of subsequent temerarious summer celebrating.
- I’d buy a better blender, and some frozen kale. Life is too short to spend any time at all, much less as much as I do, envying the smoothie pictures posted on social media by my friends.
- I will stop forgetting to make everyone take their vitamins. I have a degree in natural health, I’m the most organized person I know, but I appear to have some kind of mental block when it comes to remembering to open the vitamin cupboard until after everyone’s asleep. Or perhaps I will pay the teenager an allowance to go around and hand them out, which I’ve been making her save for college (the college I’ll take her to visit four years early as an 8th grade graduation present, so we can wear the hoodies and have the pennants up around the house while I’m still around).
Then, if nothing happens, if I live, we’ll just be another northside organic-vegetable-eating, festival-going, vitamin-taking, college-bound family, living out our days with a lot of blanket-tent-flashlight-shadow puppet shows and dance parties that somehow end with cleaner surfaces than they started with. We’ll just be those people. And then maybe, with so many more things to fit into a day, I’ll mostly not notice the cloud.
Those people. By Adèle Phung.
Not kidding, right after I read this, I bought a new blender. Thanks, Amy.
Here’s Amy’s essay I’ve Never Told Anyone That My Great Grandmother Was a Slave: A Crazy Autism Parent Speaks. Here she is on Twitter.