Holland Redux, Part two

Postscript to Holland Redux…A Continuation

In my previous post, the last line evoked a feeling the majority of us experience from time to time, and by ‘us’, I’m referring to parents of children with significant challenges. Emily Perl Kingsley’s last lines in her piece, “Welcome to Holland”, refer to the paradoxical co-mingling of grief and profound appreciation for living in, metaphorically speaking, Holland. What I think is so brilliant about that observation is the understanding that there is nothing inherently awful about expressing the pain we feel, that it is not an affront to our child or a rejection of our child. We are human, and it is human to feel what we feel at any given moment. That would include my experience of loving my son while wishing for a bit of Italy in the same breath.

The love I feel for Cliff is constant; dreaming of Italy occurs in rare snippets. I have no desire to be anywhere but where I am. I found an Ojibway saying recently that I try to remember at times like Day 42: “Sometimes I go about with pity for myself and all the while Great Winds are carrying me across the sky.”

The days and nights that followed continued in repetitive fashion, insufficient sleep and no let up of busy days. I was still recovering from surgery to repair a torn rotator cuff, and the winter cold brought storm after storm. By mid-March, the National Weather Service in Boston announced that Logan Airport received 110.6 inches of snow. It was a record-breaking amount that would too often affect travel, and in turn, Cliff’s routine attendance at his day program.

A break in routine is potentially problematic no matter when it occurs, and it was compounded by the snow’s persistence in keeping us off the road altogether. We were bored and cranky. He missed his friends, and I missed having a little time to myself. We found one or two activities that filled an hour or two—baking banana bread, small chores—and a lot of time sighing and becoming irritated with each other. He didn’t always want me in his space and I was fed up with his grouchy attitude.

“Want to play a game, Cliff? Pop-up Pirate maybe?”

“No, THANK you!”

“How about coloring? Or I could take out your play sand.”

“Anone!”

“Really? You want me to leave you alone? Thanks a lot, Cliff. That’s just lovely.”

He stomped off, yelling the words he remembered from childhood, what I said often to my kids when they were growing up: “Your tone!” (an abbreviation of “Max/Olivia, watch your tone when you speak to me, mister/little missy.”)

I can tolerate almost anything after a solid night’s sleep, a commodity that had been non-existent, one I didn’t see happening anytime soon. My resolve to wait this thing out was gone. I recalled an offer made several weeks before from Dr. McDougle, Cliff’s psychiatrist, to provide us with something stronger than Melatonin. I was initially appalled by the suggestion, but Day 42 had not yet reared its ugly head. Like the actor in the old V-8 juice commercial, the forehead slap of clarity prompted this three-sentence email:

Dear Dr. McDougle,

We are ready to try Trazedone. I’m exhausted. Please advise.

Celia Taylor

I filled the prescription later that day, and started Cliff on the lowest dose that night. I felt hopeful for the first time in a long while.

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My husband has the enviable ability to fall asleep anywhere, a skill I he perfected in his Brooklyn Pi Kappa Phi fraternity house days. He took his turns as hallway sentry on couch cushions he dragged up from the family room. I countered with the chaise lounge from the shed, with a newly purchased cushion to sleep on.

There were a few bright spots during my nightly lounge duty. My friend, Leighann was one of them. We first hit it off when we met at a support group for parents with adorable babies who happened to be born with an extra #21 chromosome. Leighann is one of the funniest and most genuine people on earth, and our late-night long-distance Face Book chats were filled with profanity-laced rants, and hilarious truths that only mothers like us could appreciate.

Laughter is good medicine, and between Leighann and the YouTube videos I found, some nights were downright…okay. Thank you, Jimmy Fallon and thank you Smosh videos. (When you need a laugh, check these out: https://www.youtube.com/watch?v=FSNasZ5W_8A; https://www.youtube.com/watch?v=JltEXpbGM8s;     https://www.youtube.com/watch?v=1GHNo_DHTF4.)

But there was a long way to go before we would arrive at the right dose of Trazedone, which we were increasing by small increments over the next month. Max and Olivia were not unaffected by the situation; they had by now become adept at getting in and out of their rooms with ninja-like stealth so as not to wake Cliff, but they never perfected the silent bathroom door push lock. The smallest sounds woke Cliff in the first hour or two before the Trazedone kicked in.

“Oops, sorry, Mom, sorry,” they each would whisper as they passed me and my awful chaise lounge in the hall.

During that time I shared my story with friends whose kids also have challenges. I wasn’t looking for advice; I needed people to talk to, people who would understand. When our kids reach adulthood, no one goes to support groups anymore, so if we need to commiserate, we do it on the fly—grocery store aisles, waiting rooms, the post office. Most listened sympathetically, or offered suggestions for getting through.

A couple of them, however, rendered me speechless one night when I mentioned recent events and how tired I was.  The reaction was not the ‘tsk, tsk, you poor thing, you must be exhausted’, sympathetic-variety reaction I’d expected. Instead it was a full-on rejection of my decision to try medication.

 “Oh, no. There’s no way I would EVER give my kid sleeping pills. No.” The other friend nodded his head in agreement. “Yeah, me neither. That just seems extreme to me.”

I remember that night as a perfect storm of exhaustion, shoulder pain and what I perceived to be harsh judgment from my friends. I couldn’t stop crying; How does anyone know what they would do in my situation? How dare they judge me!  

I felt like a failure. 

Ken was away on business and Olivia was at school, so when Max came home around one o’clock in the morning, he was the only witness to the red-eyed wreck that was his mother. He stood uncertainly by his bedroom door and sighed.

“Mom?”

“I’m okay, honey.” I wiped my nose with my sleeve. “You know I always cry when I’m tired.”

“Just go to bed, Mom. I’ll stand here in case he wakes up.”

I nodded gratefully, and crawled into my empty bed. I considered washing off my makeup and brushing my teeth first, but I thought my snotty sleeve completed the trifecta of exhaustion-induced righteousness rather well. With what little energy I had left, I raised my middle finger in the air in a fuck-you salute to the whole world.

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Post Script: In June, after almost four months of Cliff’s night time shenanigans, we were back to normal. I had come home from visiting my mother in New York, and Ken reported the previous night was downright restful! Whatever thoughts had been troubling Cliff seemed to have vanished. Why? Your guess is as good as mine. I like to joke about performing the “Vulcan Mind Meld” on Cliff, a la Mr. Spock, to see into his head for once.

Cliff is back to taking Melatonin alone, and though he is still restless at night, he works it out for himself and goes back to sleep. I’m happy those months are a distant memory, but I’m most happy for Cliff; his nights are peaceful, his life content. I’ve come to understand some problems are not within my power to fix, but I’m still working on not beating myself up about it. That’s a loooong process!

Here’s what else I’ve come to understand: Lounge chairs in the hallway should be against the law; it’s okay to fall asleep occasionally without practicing proper hygiene; the use of profanity in all its forms is a legitimate self-help tool; if you need a freaking pill, take a freaking pill; finally, I will always love Holland—besides tulips and windmills and Rembrandts, Cliff is at the center of all that beauty.

Holland Redux

When I first read, “Welcome to Holland”, I had been a mother for two years. The essay by Emily Perl Kingsley is a brilliantly crafted answer to the question she’d been asked many times—“What is it like to raise a child with Down syndrome?” Her son, Jason, the first child with Down syndrome to be featured on “Sesame Street”, inspired her answer.

She compared the experience to planning a trip to Italy. She buys the tickets, and gets herself ready by studying the language, the culture and the sights, looking forward to all it would have in store. Instead of Italy, the plane lands in Holland, a place she knows nothing about, and hadn’t planned to go.  Once she arrives, she has to readjust and, though it takes some time she gradually comes to love and appreciate the beauty Holland contains. The essay continues the analogy with this theme of being somewhere she hadn’t planned to be.  (You can read the full essay here: http://www.our-kids.org/Archives/Holland.html). Emily’s essay is referenced in the story I’m about to tell here.

Living with Cliff is mostly wonderful and funny, and our love for him grows exponentially every day. Over the years he has presented us with behaviors that are benign--tossing the remote behind the television cabinet over and over and leaving the dinner table to eat in the dining room by himself, for instance. Then there are the behaviors that challenge our patience.

Earlier this year, my family and I experienced a frustrating period of time in which Cliff barely slept. From mid-February to early June, some unnamed fear (if it even was a fear) had its grip on him. Whatever the genesis of Cliff’s odd behavior, this would be yet another mystery for which there was no answer. How does a parent fix a problem that is completely irrational? Answer: you don’t; sometimes you just wait for it to go away.

*********************************************************************************

It is somewhere around Day 42 when it hits me:  I’ve landed in Holland again. That’s where I am, in an existential sense anyway. The time is 12:58 a.m.  I’m sitting in Olivia’s desk chair in the upstairs hallway, positioned strategically so Cliff is able to see me from his bed where he’s been since his 10 p.m. bedtime. His room is tranquil; dark except for the light coming from the hall; his “Peaceful Evening Music for Relaxation” CD plays at low volume; perfect temperature, comfortable bedding, a spritz of lavender—there is nothing I’ve left out in the desperate attempt to take back my life.

After nine mg. of melatonin and an Advil PM that should have taken effect by now, I sit in this chair doing my best not to explode at a 30-year-old who has become fearful of being alone at night. He sleeps and wakes, sleeps and wakes again in a panic I can’t understand and he is unable to explain. I’ve lost count of the single word he repeats in an endless loop—“No”—which comes out in audible whispers interspersed with low mournful groans.

Three hours ago, I was the Mommy with the patience of Mother Teresa.

“It’s time for sleep now, Cliff.  Everything is okay. Tomorrow is a busy day.” He lets me kiss his forehead and fix the blanket. I’m doing what the psychologist recommended in our meeting over a month ago.

“Whatever you do, don’t let him sleep in your room ever again.” This was his advice: an answer to how Ken and I might get our bed to ourselves again. “Your mistake was allowing him to sleep between you in the first place.”

“Yes, but if you had seen his face…” My voice trailed off. We are guilty of making the mistake of trying to fix things for him by giving in. By treating him as though he were still a little boy, and not a grown man.

The psychologist had warned it might be a long time before Cliff would return to his normal bedtime patterns. “A couple of weeks maybe,” he’d said. “And don’t try to figure out why this is happening; you’ll never know and it doesn’t matter. Just concentrate on getting him back to his normal routine.”

On this night, number 42, I sit like a sentry in the hall. I’m balancing my laptop on my knees to catch up with the final season of “Glee”, search for a desk on Craigslist, check Face Book for updates. But the sleep deprivation after more than six weeks reaches a crisis point, too many nights in a row, too many “No’s” to count over these three hours. I’m over the martyr routine I’d insisted on, telling Ken to go to bed because he had to get up for work in the morning.

I want to go to bed. I’m bored and exhausted. I envy everyone in the world who is sleeping, making love, traveling somewhere exotic on the redeye, driving home from dinner and a show, or dreaming in a deep sleep.  I’m rising out of the chair, wincing at the knot in my back. Oddly, Cliff’s face shows no fear despite recognizing the level of anger in my expression.

Suddenly there is a monster in the room, yelling words she will regret later: “Go to sleep, dammit. Just fucking go to sleep!”

 I’m swearing at him and his eyes are full of love for me, but I’m so very, very tired. “What is the matter with you? You’ve got to cut this shit out! I’ve had it, Cliff!”

Ken appears at the door to take over, turns me around and gently points me toward our bedroom. I am empty of everything except the pitiful sobbing that goes on and on until I fall asleep. I’m sick and tired of Holland, had my fill of tulips and Rembrandts.


To be continued...

Life Lessons

By the time I heard the story I’m about to share here, my daughter had already filed it away in the nothing-left-to-see-here-folks-move-along-now category of her thinking. But it had left its imprint inside her, like a scar that never quite fades away. It happened in the spring, not far from where she lives with five other UMASS students in a townhouse in Dorchester.  It feels terrible and sad each time I think of it, because I wish the story had a happier ending. 

She was walking along Mt. Vernon Street one afternoon, thinking about what she wanted for dinner. The route to the grocery store had taken her from the relative safety of the townhome community to the sidewalks bordered with chain link fences and a scattering of maples.  Earlier in the day, a homeless man had found a spot on the sidewalk on which to park his shopping cart, and sat on the sparse grassy area next to it. As she drew closer she smiled at him, but he didn’t smile back, or in any way acknowledge her presence. In a split-second assessment it was obvious to her, based on his unkempt, grimy clothing and the fat, black garbage bags in the shopping cart, he was destitute and sadly in need of help.  

This observation had no obvious flaws, and of the competing feelings in her pretty head, empathy won out over fear and selfishness.

She thought to herself, “You know what? I think I’m going to make him a little care package.”   It was an impulsive decision, and once she made it, no other thoughts intruded that would bring her to doubt herself or misinterpret the situation. She was on a mission, one that could possibly change the homeless man’s entire day.

That part of the story didn’t surprise me.  Olivia always had a sweet disposition and a firm mindset against social injustice. The older she grew the more I saw in her a desire to please, even if it might invite disappointment, even if it seemed the other person wasn’t appreciative. She was given to similar impulses of charity, giving away things she owned and caring for sad-eyed abandoned dogs.  

In her early teens, she spent an entire summer bereft over her best friend’s alliance with a group of nasty teenagers who called Olivia hurtful names.  I’d sometimes find her either crying or psychoanalyzing everyone involved. That kind of betrayal is never justified, but eventually she found it in her heart to forgive her friend, because her friend needed forgiveness more than Olivia needed to remain angry.

The rest of the story goes like this: Inside the store she took her time thoughtfully choosing items a homeless man might need: a package of tissues, mouthwash, deodorant, snacks, bottled water, hand sanitizer and Advil. These items she packed in a separate bag at the register. It’s safe to assume here (she blew past this part of the story) that she didn’t have enough money left to buy all of what she’d intended for herself.

On the short walk back home, she made a plan to put the bag down and walk away. But when she was close enough for the man to hear her she spoke, wanting to make sure he understood it was for him.

“Hi, sir, how are you today?” The man glanced up at her and looked away. He continued eating the remains of whatever he held in the greasy paper bag on his lap. “I got something for you”, she told him, and he shook his head no without looking up.  “Oh, are you sure?”  He didn’t answer so she continued, “Okay, well, I’m just gonna leave this for you,” and she put the bag down.

Instantly, he grabbed the bag and threw it into the street, the contents spilling onto the road and oncoming traffic.  Olivia was momentarily stunned. She backed away and mumbled, “Okay…point taken.” She gathered her gifts one by one from the road, and walked the rest of the way home, shock morphing into complete and utter devastation. 

She wasn’t angry at him; the tears that pooled in her eyes came from hurt and self-doubt. She wondered if her small offering had come from pure altruism.  Or did I do it because I wanted to feel good about myself? Was I on some kind of a control trip? I mean, he shook his head no and ignored me. But I went ahead anyway, because I thought I understood what he needed. For the rest of that day and the days that followed, the memory of it faded a little, but not the sting.

The homeless man story was several weeks old by the time I heard it because she had suffered from the incident and wanted to understand it better before she told me.

“I felt bad about myself, you know?”  We were at our favorite breakfast place on one of her visits home.

“It would have been less hurtful if he had said, like ‘get out of here you uppity little girl, you fake do-gooder wannabe’ or whatever, than like, taking the stuff I just bought and throwing it into the street.”

I nodded, not quite understanding the nuance. “So what did you do with the things you bought him?”

“At first I thought I’d hold onto them and maybe give them to some other homeless person, but I was shut down at that point. I eventually ended up eating the snacks and drinking the water, of course, but the rest of it is still in my room. I don’t know, now I’m afraid to try that again because maybe it’s not a good thing to do anymore.”

   

That’s how we left it. I wanted to tell her she had it all wrong; there was not one uppity fake do-gooder wannabe bone in her body. But I knew she had already processed the whole affair for herself.  Some people can’t be helped, and there’s no way to know who fits into that category for sure.  We act on instinct most of the time and she had only followed the giant heart beating inside her body. It was a good lesson. It seems to me the ones you learn on your own form an irrevocable pulsing mark of understanding, much more so than anything even the wisest parent could offer.

I only wish I could ease the sometimes painful progress of her life, of all my children’s lives.

That’s just not how it works.

 It’s the lesson I learn over and over.  Not that it keeps me from trying.

The Gift

This is a fictional vignette I wrote awhile back. It's based on an encounter I had with a white-haired woman and her daughter at the grocery store. I wondered about them, but I never saw them again.

The Gift

What can I do? I am an old woman. I did not do the one thing I was supposed to do. It always felt...impossible. It was easier to do nothing. I am just an old, foolish woman.

Today at the grocery store I met someone. She was much younger than I, petite, with a face that was a little worn, though she was dressed like someone of means. But what do I know? I was never a person of means, so I think everyone else has more than I have. She smiled at me as she passed with her grocery cart. I noticed that her gaze lingered on us, my daughter and me. I am used to staring by now, Lord knows.

When my daughter was born 68 years ago right there in our little house on Elmwood Street, we were delighted, my husband and I, to bring this lovely, dark-haired child into our lives. But in time, and after countless doctor visits, we discovered she was deaf. In those days there was no help for people like us so we kept her home and did the best we could. School was out of the question because she could not hear the teachers. Social workers came and went, but no one had the answers we needed. An institution for our sweet girl? Never! But that was the offer and that was unacceptable.

Charlotte grew and was mostly a compliant child, happy and loving, but from time to time she was given to rages. Some days I would have to wear long sleeves because the scratches she left were ragged and deep. After the rage, Charlotte would sit in a corner and rock in her chair, blank-faced and staring at nothing in particular. She seemed happiest when I sang to her—“I’ll Be Seeing You”, “You Are My Sunshine”, “A Bushel and a Peck”. Our hands would dance, and she smiled at my animated face. Sometimes I would imagine she could hear me. 

My husband left us, of course. Men don’t stay when life overwhelms them. Just the mothers do, it seems to me. That’s because we are stronger. But what do I know? I’m just an old, foolish, lonely woman.

And now, in my 89^th year, I can see how this will end. It’s because I did not do the one thing I was supposed to do.

The petite woman and I face off at the cashier’s lane as we both arrive at precisely the same time. She defers to me with a nod and I say, “No, we’re not ready.” She approaches, her kind eyes holding on to mine. She asks me if my daughter and I are sisters. I laugh and say no. She tells me I am sweet, and attempts a connection with Charlotte. The woman’s smile and light touch on Charlotte’s arm briefly startles her so I begin to pull away from the smiling woman who hesitates a moment before explaining that  her son has Down syndrome and  she understands Charlotte’s reaction. I nod my head.

“Well…” I say. I’m nodding and nodding as Charlotte and I continue our progress down a different aisle. She stands there, watches us go. I see something in her eyes that I can’t quite identify.  She waves goodbye and I almost call her back. Almost.

I am alone. My daughter is my companion, my one and only love in this world. There is no husband to depend on, and my one sister died twenty years ago from the cancer. Her daughter, my niece Anna, lives far away and we were never close.  She had no patience for Charlotte growing up. When she and my sister would visit, Anna avoided Charlotte the way one avoids a dread disease or a bad smell.

Once, the social worker came to my house and asked, “Don’t you want Charlotte to live with people her own age, where she would be well cared for and have a life of her own?” But I said no one could take care of Charlotte as well as I can. I told her Charlotte was used to me, used to our home and our routines. She loves her room and her stuffed kitty. There is no better place for her. Besides, what would I do without her to care for?

And now, I see how foolish I was. Now I have to do the unthinkable. And it’s because I didn’t do the one thing every mother must do.  Tomorrow, Charlotte and I will go into our small garage. I will strap her into her seat belt, lock the car doors, and turn on the engine. She’ll hold her kitty and I’ll read her favorite books. Good Night Moon. Alice in Wonderland. Alf Goes to Space. I will read them over and over until she falls asleep. Then, and only then, will I allow myself to succumb, hold her close until we break the tethers of the Earth.  God will stretch out his arms and gather us like wildflowers.

Old, stupid woman. I did not do the one thing I was supposed to do in this life.

I did not relinquish my Charlotte to others because I simply could not. She is all I have.

I am writing down instructions for whoever finds us, when I hear a knock on the door. No one comes here except that annoying woman, Joyce, who lives next door and thinks it’s her responsibility to check to see if I’ve broken a hip or something. I open the door. It is not Joyce.

It is the woman from the store. She has brought me my purse. “You left this in your grocery cart.”

I stare at her, and manage an, “Oh!” The orange sun shines just behind her dark- haired curls, the effect creates a halo.

May I come in?” she asks, still smiling, and I think oh, what a lovely smile, just like an angel.

I open the door, invite her in. Charlotte sits in her chair, rocking.

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.

“No!”

“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.

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.

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 21^st!   (The date 3/21, is representative of the third copy of the 21^st 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 21^st 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!