Sunday, November 9, 2014

Love Notes

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.

Sunday, September 14, 2014

What Memory Conjures

When I enter the brown stucco house on Wesley Ave., my childhood home, it seems the air inside the tiny foyer has lost some of its composition.  It is as if the chemical compounds of the atmosphere have drifted off, like clouds or mist or ghosts. “Hi Mom,” I say loudly so she can hear.” She walks to me slowly, and greets me with a lingering hug. “Hi, Ceil. How are you?” I breathe in the scent of her hair spray. “You look beautiful, Mom.”

I always find an excuse to go upstairs soon after I arrive; I’m drawn to my parents’ small bedroom with its beige walls and mismatched furniture. It calls me. Or perhaps it is someone else calling me. The door sticks and I have to push it open. My sister, Barbara, had an enlargement made of my parents’ wedding photo, colorized it and framed it as a gift. It’s so large it takes up a good portion of one wall, as it should; it is homage to a marriage that lasted sixty-two years.  My mother’s lace, ecru veil falls over her black wavy hair, and my Dad’s image reminds me of the Rat Pack days.

 The things my father left behind still clutter the top of his dresser and nightstand nineteen months after his death. They are just things, but when he died the things were imbued with a preciousness not normally attributed to CVS prescription bottles or Visine eye drops, and so we have not yet thrown them away. There are five or six Ace bandages and braces—knee, elbow, wrist, ankle, hand-- an unopened Infinity Razor, antacid lozenges still shrink-wrapped.

Scraps of paper lie scattered about and folded in half, with phone numbers and names of former clients. Someone has unearthed his passport and I open it to see a grand total of two stamps dated 3/91, New York to Roma. Jesus hangs on a wooden cross propped up against the wall, and I don’t understand why no one ever hung it back up after the room was painted.

“I used to come in the room and find him gazing at that cross.” My mother shared this with me after the funeral. “I think he was getting ready.”

The hardwood floor creaks in three different places on my way to the closet. I open the door and turn on the light.  The smell is an inconsonant mix of mothballs and Chanel. It permeates the space and feels familiar, as though no time has passed since my sisters and I hid inside with the scarves and fur stoles and hat boxes as children. Most of my father’s clothes no longer take up space in there but we’ve kept a few jackets and ties he’d wear over and over again; I run my hand over the fabric, sift through his favorite ties. The red one is missing because we all agreed he should wear it when he arrived at Heaven’s door. He would want to look his best, after all.

I sit a moment in the worn, red recliner by the window. He had trouble sleeping sometimes, the pain of achy joints forcing him to try sitting up to get some relief, and in the morning he’d go downstairs and make a cup of coffee for my mother. Even when he’d had a lousy night, the ritual of bringing her coffee in bed was important to him. They’d watch the news, she from the bed and he from the chair, until it was time to get dressed and make breakfast.  

Someone calls for me from downstairs, where my sister has been making the gravy and meatballs. I’m suddenly starving.

Before I leave, I linger by the bedside table, pick up one artifact after another: Vicks Vapo-Rub, half-empty, one of his business cards--Tony Meloni, Licensed Broker, Sales, Rentals, Notary, a tube of Aspercreme.  I purposely leave the best for last. A reminder note written on the back of a faded Lotto ticket. “To Celia—give her a blessing for her to give her our love--#1.” The wording is off, but I know what he meant. I am daughter #1.

I know he isn’t in that room anymore, but the conjuring of memories sustains me. They are bittersweet but lovely. Just like life.

Monday, March 24, 2014

World Down Syndrome Day

I had my first baby on a Thursday in 1985. Only my family and closest friends welcomed his arrival, once they recovered from the shock.

In 1985, people stood in line to see movies like “Back to the Future”, “Rambo”, and “The Color Purple”. They listened to Madonna’s “Like a Virgin”, and a bunch of prominent musicians got together to make the hit single “We Are the World”. Coca Cola introduced Cherry Coke. Ronald Reagan was sworn into office for his second term and Billy Joel married Christie Brinkley.

These events were celebrated to varying degrees all over the world.

Meanwhile, on that Thursday in 1985, my husband went in search of information about Down syndrome at the public library where he found three books, all terribly outdated and depressing. He brought them to my hospital room, apologizing because he could find not one hopeful book to make it all better. If he had been looking for movie reviews, pictures of Christie Brinkley in her wedding gown, or the logistics of getting  forty-four famous musicians together on the same night to record a song, his search would have been markedly more successful .

A week later, we visited the home of Emily Perl Kingsley, author of “Welcome to Holland” and writer for Sesame Street. Emily is the mother of Jason Kingsley, the first child with Down syndrome to appear on the celebrated show. She shared her experiences with us and held our baby with such tenderness. Jason, almost eleven at the time, arrived home from school and took our son’s tiny hands in his. “Hi baby,” he cooed, “Welcome!” His presence taught us much about what was ahead for us. Emily and Jason were our first teachers. We’ll always be grateful to them for giving us the positive messages we needed to hear.

The intervening years have brought many encouraging changes thankfully, and individuals with Down syndrome are welcomed into the world more readily and in celebratory fashion. We still have a long way to go, but how wonderful it is to witness events like World Down Syndrome Day, celebrated every March 21st!   (The date 3/21, is representative of the third copy of the 21st chromosome that results in Down syndrome.)

Imagine that! All over the world people are celebrating our children. What is happening is incredible and long overdue. In December, 2011, it was decided by the General Assembly of the United Nations that March 21st would be officially celebrated in 192 countries starting in 2012.

The General Secretary Ban Ki Moon, declared, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms.  Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

New moms and dads can rest a bit easier today, knowing they have access to the information they seek about their children born with Down syndrome. They and their children can look forward to a life rich with opportunities and a more positive outlook.

Who has made this possible? Why, the moms and dads who came before them! They have helped to shape a more welcoming world.  Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has.”

The work is far from complete. We have “miles to go before we sleep”; we must never be complacent, but continue the work others have begun.

I raise my glass to all of us, to our children, to a better, more informed world, one in which a new mother and father are surrounded not by untruths and frightening outcomes, but by the good news of the beautiful life ahead.

Happy World Down Syndrome Day!


Friday, February 14, 2014




When kids are young, they tend to believe their moms and dads are capable of almost anything. We know everything there is to know; we can perform superhuman feats; we possess the power to create something out of nothing. The everyday contains a magical quality in their little eyes. They believe us to be the most important beings in their world; their faith in us is absolute and unwavering.

The day they first detect the inklings of our failures, flaws, and limitations is a sad day indeed. They break our hearts when we see in their expressions each disappointment, every dashed dream, the evidence they had us all wrong.

It is the beginning of their growing up. The drifting away is imperceptible at first; it catches us by surprise at the first “I can do it myself, Mommy” and “Mom, you don’t have to come with me.” We think, “Oh thank God I don’t have to do THAT anymore.”  We settle into the years of gratitude for not being quite so busy with feeding, dressing, nurturing, comforting, playing, all while trying to make a living.

One day our arms will feel empty, like someone went and emptied the ocean when we weren’t looking. And for the rest of our lives we will wonder where the time went, hold our breath when they go off to learn how to be grown-ups without us beside them.

In quiet moments, we will gaze at their baby pictures and feel the unique pain only mommies and daddies know. The pain not merely of missing them, but the pain of regret for what we failed to do.

Our regret will be expressed in the form of wishes; “I wish I had” and “I wish I hadn’t”. When all he asked was “Mommy, can you play this video game with me?” and all she asked was “Can you show me how to cook?” but you were tootiredtoobusytoodistractedtooboredtooinconvenienced to say yes.

It will feel like we have been stabbed in the heart if we allow ourselves to think about it. We will tend to dwell on all the small things we did wrong because the small things become huge, in the way molehills turn into mountains. What we did wrong will blaze as brightly in our minds as the signs on the Las Vegas strip, particularly at times when our hearts hurt for a million other reasons. All we will wish for is a chance to do it all over again.

Yet there is good news: Despite our failures they will love us anyway. They will forgive us for not knowing fourth grade basketball camp gets out early on Fridays, causing them to wait alone and frightened because everyone else has left. They will forgive us for not getting the right kind of Barbie sneakers, and for making them move far away from their friends when they are thirteen years old. They will minimize all the hurts and disappointments caused by us because that’s what love can do. They will put their arms around us and say, “I’m so glad you’re my mom.” Or be happy to see you after all day at work, or they will surprise you with an entire essay written on Face Book for everyone to see, about what a wonderful mom or dad we have been, declarations of praise we don’t for one minute believe we deserve.

Then we will realize we must have done a pretty good job after all. We will come to understand how hard it is to be someone’s parent, and that we did our best with what we had. We will continue to revisit our failings because we really, really meant to do a better job.  But we will know, in the deepest part of our heart and soul that every day is a new chance to get it right.




Here is a favorite piece by a writer friend of mine, Evelyn Zepf. I think you'll agree it fits in with my post. Enjoy.

Last time
The last time I carried my children in my arms
Was not remembered as a milestone
I never knew
that was what it was
As I lifted to comfort
or carried sleeping up the stairs
Remembered milestones are always firsts
First words, first steps, first days of school
We celebrate beginnings
But endings hold a melancholy grief
We don't recognize them for what they are
Always hoping
For just one more time...