I communicate in notes; some I write to myself list-style, because my memory isn’t what it used to be. call for ENT referral; bring Cliff’s tap shoes; transfer $ to Olivia’s account; call Adrienne. Some notes, hastily written and left on the kitchen counter, state my whereabouts or instructions—went for a walk; went grocery shopping; please, please call when you get there; don’t let the dog out. I always sign them with my trademark heart shape.
And then there are the sticky notes I leave here and there for posterity. They’re mostly meant for my husband, Ken, but anyone who walks through the house can see them. Some begin with the words, “If I drop dead…” because I find it grabs his attention. It also signals something of great importance, at least to me. The less important notes have no such introduction. For instance, I’ve attached sticky notes to the small television in Cliff’s room that read “volume at 10” and “lower the blinds”. I put them there over a year ago when I had to be away from home for a few days. Most nights I’m the one who helps Cliff get ready for bed, but if I’m not there Ken takes over. A year and nine months, and yet when I get home and look in on him, the blinds are always up and the volume is at 17.
So I’m left to wonder whether he has internalized any of my “if I drop dead” notes. It may seem odd to you, but if I’m about to drop dead, I doubt I’ll have the opportunity to say, “I’m about to drop dead! You have to report Cliff’s wages to Social Security within the first six days of the month! The phone number is on the pad in the junk drawer!” The most recent note, taped on the cabinet by the phone reads, “If I should drop dead, God forbid, Cliff takes one and a half Buspar pills in the morning and one and a half pills at four o’clock.” I wrote it in the middle of the night when I couldn’t sleep, the day after the St. Anthony feast. In fact, that’s precisely why I couldn’t sleep. I was too busy obsessing over the issue (an issue resulting from my other obsession with doing everything myself) of inequality around here.
This is what happened: Ken and I had taken the train to the North End of Boston with Cliff, excited to check out the food and desserts and enjoy the warm weather. But somewhere between the Norfolk and Norwood stops I realized I had forgotten Cliff’s medication, the one that keeps his levels of anxiety and irritability within a manageable range. He’s much less of a “Mr. Crabby Crabby-ola”, as I like to refer to him, when things don’t go his way. I had been rummaging in my backpack for some mints, which I did remember to bring, along with a bottle of scented hand sanitizer, a few loose tissues, my iPhone, a protein bar, wallet, and subway map.
“Crap. I should’ve brought the Buspar with me. He’ll need it before we get back.”
Cliff stared at me for a second when he heard me sigh and said, “You mulla”, which translates to “You silly mother”. I smiled at him, but I was already anticipating a less enjoyable day. The self-blame began as a seed in my gut (why hadn’t I written myself a note?), a seed of dread which would grow in me over the course of the afternoon.
Ken looked at his watch and calculated our return ETA at after six p.m., more than two hours after Cliff normally takes the afternoon dose. “Well, there’s nothing we can do about it now. It’ll be fine.” And with that, he didn’t give it another thought, at least not that I could tell.
“I doubt that, but okay.” As a general rule, Ken is the pessimist and I’m the optimist in this relationship, but based on empirical evidence, I was pretty sure it wouldn’t be as "fine" as I would have liked.
“Mint?” I held out the open tin to Cliff. He managed to touch half of them before he could grasp two and get them into his mouth.
Cliff sat restlessly between Ken and me for the rest of the ride, turned halfway around to check out the people sitting behind us. He kept one arm outstretched over the headrest behind my head, tap-tapping his fingers on the faded red leather. I gazed out the window then, re-visited by a gnawing truth I held close at first. I kept thinking of the blinds no one lowered but me, the volume no one turned down but me.
The Green Line dropped us near Endicott St. and we followed the slow-moving hordes down the narrow side streets. It was pleasant at first. We bought eggplant sandwiches and ate them as we listened to an Italian singer standing on a small wooden stage set up on one corner. It was a messy way to eat and each time I attempted to wipe Cliff’s mouth before the sauce dropped onto his shirt, he grabbed the napkin out of my hand and stuffed it in his pocket. That’s what shirt sleeves are for, he seemed to tell me.
Afterwards, we located the best-looking Napoleons and Sfogliatella, eating as we went, and watched as people snapped pictures of themselves in front of a statue of St. Anthony. We were there barely an hour when the heat, the narrow streets, and the crush of people and no comfortable place to sit began to wear on Cliff. It took awhile to make our way back out to Endicott, bumping into St. Anthony fans and squeezing sideways to get by, so by the time we walked down the stairs to the subway, Mr. Crabby Crabby-ola had appeared in our son’s place. Cliff unlinked his arm from mine with a huff. He stomped off to stand by himself on the platform. Ken and I sat a few feet away and pretended we weren’t watching him. The next subway was fifteen minutes out.
“Cliffy, come sit down with us.” Ken patted the empty spot on the bench next to him.
“Okay, fine. Suit yourself,” I said.
“Fine!” He folded his arms and turned away from us. His mad face at twenty-nine looks so much like his mad face as a little boy; it stabs me right in the heart. But he’s a grown man, and the gnawing returns and grows into a decipherable thought. It fills the space between my husband and me, enters all the cracks until I speak up, rejecting the voice in my head telling me that everything is my doing.
“I wish I hadn’t forgotten to bring his pills.” I stared ahead at the clock on the wall above the tracks. Orange line, 11 minutes to arrival.
“But, you know…” I spoke hesitantly. “I shouldn’t have to be the only one who has to remember these things.”
I let that be the last word until much later, after we’d gotten home and I’d handed Cliff the Buspar and a glass of juice.
“Here’s a thought,” Ken offered, “just keep a few pills in your purse. That way, you won’t have to remember to bring them.”
“Good idea. I can do that. But…” I rubbed the back of my neck where the familiar pain of my tension headaches had begun to pulse and take root, crawling like a thousand tiny vines up my skull.
“Listen, if I drop dead, God forbid, do you promise to remember everything?”
“Of course” he said, “I’ll make a note of it.”
Standing in the kitchen with my sticky note pad that night, there were several truths I had come to realize and truly understand. The reason I was the only one who seemed to be in charge of everything when it came to Cliff’s health, his schedule, his meals, watching his weight, finding friends and respite and services and activities, is that I had set it up that way. I WANTED it that way from the beginning. It was the same when Max and Olivia came along. The primary caregiver…that was, is, me. It was something I did well and I loved it so much, I had unknowingly created the situation in which I now find myself.
The imperative, the bigger truth is this: the grasp we have on life is tenuous. I have an entirely different perspective as an aging parent of a son with Down syndrome. Listen, I don’t consider myself old by any means (I just turned fifty-seven), but I see the tactical error I’ve made in my perfectionist thought processes. What I do for Cliff I do with great love, and I’d do it forever if I could. How do I quit the all the ways I’m entrenched in habit and routine?
Parents like me, like Ken, see we are steeped in a paradox; Buddha said, “Everything changes, nothing remains without change”, and yet we live as though nothing will change. It’s like carrying an ice cube in your bare hands and willing it not to melt.
After I went back to bed that night, I felt better having written the note, until I wondered if there were enough sticky notes in the world to write it all down. I stared at the ceiling awhile, then turned over to watch my husband sleep. When I wrote the notes a year and a half ago and stuck them on Cliff’s TV, they were just two of many instructions I’d written before I went to New York to say goodbye to my dying father. It would be nine days before I would return home. I began to finally fall asleep then, with the memory of it. My family had not only survived without me, they had survived well. That’s the biggest truth, one I don't even need to write down.