Chasing Sunlight

Early March, and the unseasonable warmth has drawn me outside to walk the streets of my neighborhood, past sidewalks where my children used to ride their bikes and the corner where they’d wait for the school bus and where, in the good old days, there were block parties with frozen margaritas, and neighbors who slowed down in their cars to say hello. 

I walk up Cooper, around Charles Drive to Skyline in a loop, and stop a moment at what remains of the wildness there. Once comprised of blueberry bushes, overgrown grasses, and teetering tall trees, most of the area was decimated by builders. The scraggly path of dirt and rocks where my husband would take our son, Max, where he could safely let our Sammi run off-leash, exists only in memory. A couple of acres survived, the others replaced with pretty, cookie-cutter homes.

Sammi is long gone, but her ghost is still around to help me remember just how short a dog's life is, too short to waste time yelling about muddy paws on the just-washed linoleum,  She was my introduction to dog ownership, and as much as I wanted to love her, I could only muster up a tolerance for her in the beginning. Looking back, I realize I was already overwhelmed with taking care of three kids--two of them under five, and a son with special needs, so throwing a dog into the mix was more responsibility than I cared to have. It took me a good long time to come around to being fond of her; I never considered myself to be a ‘dog person’, but I believed my children needed Sammi to complete the idyllic picture of their childhood.

One December evening, Ken and I sat our children down on the couch to deliver the news that Sammi was dying. A blood disease had taken over her body, one common among the Springer Spaniel breed. There was nothing the vet could do to fix her.

“But she’s only six years old!” Olivia wailed. It was the saddest Christmas on record, with Sammi gone just two weeks before, buried in the woods behind the house with her blanket and the bone I had bought for her Christmas stocking.

I expected the kids to be upset after she died, but I had never imagined my own reaction would be so visceral. I must have cried twice a day for weeks. I missed hearing the sound of her nails on the bare floor; I kept expecting to see her curled up in her go-to spot by the piano, where she had worn down the carpet from the thousand circles she made settling into a round sleepy pile of black and white fur.What a bittersweet way to figure out I did love Sammi after all.

In the toy section of the January, 2002 L.L. Bean catalog there appeared, almost miraculously, a perfect replica of a Springer Spaniel puppy. I took the personalization option and the dog arrived just in time for stuffed animal day in Olivia’s second grade classroom. That toy was a constant companion from the day I put it in her outstretched little hands. Stuffed, personalized Sammi has gone from home to overnights at friends’ houses, from summer vacations to college apartment. I don't expect she will ever tire of her.

Ever the optimist, I began to search for another puppy five months post-Sammi, and found a breeder in Western Massachusetts with several Springer puppies for sale. It’s hard to believe it’s been fourteen years since the rainy spring day when I pointed to the least active puppy in the pen and said, “That one.” I figured the calmest one would be less work. The puppy wiggled (and peed) in my lap for much of the hour-long ride home. We passed the time thinking up names for him.

Max and Olivia came up with the name Jojo, and Cliff agreed. Thenceforth, his name would be Jojo the Puppy.

Jojo, like so many good old dogs, has been ours for what feels like forever, the kind of forever that makes it impossible to imagine he might ever cease to exist. We’ve loved him through the multitude of seasons--fourteen winters springing over powdery drifts of snow, fourteen springs lying about in the cool grass, fourteen summers chasing the sun’s reflection whenever someone opened the storm door, fourteen autumns greeting strangers walking by as though he knew them personally.  Even the UPS driver gets out of her truck if she sees Jojo outside, regardless of whether or not she has a delivery. Jojo eats up the attention, her tail in constant motion.

We all grew up together, my kids into young adults, and me into a the dog person my kids hoped I'd become.

In February, Ken and I delivered the news that Jojo has lymphoma, to Olivia over the phone, and to Max when he came home from work. I’ve been preparing Cliff for a couple of weeks, telling him only that Jojo is very sick and will go to Heaven soon, and that Grandpa will take care of him there.

For the last two months, the kids and I have been capturing Jojo in pictures and videos in all of the moments we will want to remember, all the “lasts”. Soon, my walks through the neighborhood will be absent of the dog barking and barking insistently from inside the invisible fence as if to say, “Hey, where are you going? Take me with you!”

Everyone who walks by our house will wonder what happened to the happy dog that lives there. The UPS driver and the children so accustomed to his wagging tail will ask where he is.

I’ll point to my broken heart; “Here.”

A package arrived the other day, inside it a liver and white English Springer Spaniel stuffed toy. I plan to give it to Olivia for her 22^nd birthday in April, a replica of the dog she calls ‘my little gentleman’. I’ve anticipated she’ll need it.

I read a book recently, an instruction manual of sorts, about how to let go of a beloved pet. The author, Jon Katz, wrote about the way our pets come and go,  marking a specific season in our lives.Soon I will think back on the Jojo season as a time filled with changes big and small, but the most significant part of these fourteen years will be how much happier it all was with our little brown-eyed wanderer, Jojo the puppy.

To the Young Woman Who Sat Next to Us at the Movies

I can remember a time in my (much) younger life when I was afraid of a man named Donald. I had no logical reason to be afraid of him; he never bothered me, or even looked my way as he walked slowly up and down Westchester Avenue, a main road in the town where I grew up. He couldn’t have been more than five and a half feet tall, and we were always separated by at least a street length .  

To a thirteen-year-old girl, the problem was he didn’t look right. He seemed unkempt—thin, worn khakis, oversized jacket—and he walked with a limp. One black shoe was built up so tall, it appeared he’d accidentally pulled on two different shoes that morning. The truth is he wore an orthotic shoe with a stack of metal plates inside, because Donald’s legs were not evenly matched.

That’s the memory that came to me when, by chance, my son and I sat next to you and your family. We had been running late so, once we finished eating we had to hurry to the movie theater. “My Big Fat Greek Wedding 2” looked to be the kind of movie my son might find silly enough to hold his attention, given the fact he’d more than likely be unable to follow the plot line. Physical comedy, slapstick, larger-than-life characters skilled at funny-face expressions—that’s the genre we go for.

Anyway, we stood on line for popcorn—no butter--Welch’s fruit snacks, small Sprite, and headed for Theater 6. It was crowded inside, as you know, and the front row seats we prefer were already filled.

We stood at the bottom of the stairs while I scanned the theater for two seats together. A voice called out, “Are you looking for two seats? These are free.” An older woman four rows from the back pointed to the empty seats next to you. It might have been your mother, but I can only assume. I felt so relieved and grateful for that lone voice in the crowd.

“Come on up here, Cliff. Follow me.” We linked arms and climbed up, thanking your family for standing up to let us by. I didn’t notice anything about you at first; I was too busy wrestling off our coats and trying to convince my son not to inhale the bag of candy before the movie even started.

The coming attractions played, but no one had turned off the lights. People were shouting, “Shut the lights!” “Hey! Lights?”

A few of us clapped for the lady in the last row who announced her intention to find someone who could rectify the situation. She had a ton of blonde hair and a voice that carried. “Alright, people, I’ll take care of this!” Do you remember that?

I sure do. Do you know why? With the lights on I began to notice you moving yourself as far as you could away from my son. At first, it was a subtle movement. I wasn’t exactly sure what made you shift so far to the right.  Then I saw you glance over your shoulder at him. And I immediately understood; your expression was unmistakable. What was it that made you cringe like that?

Was it the anticipatory giggle Cliff was making, the sound he makes sometimes if he's a little anxious or sometimes when he's just plain happy? It wasn’t loud, and he was quiet once the movie started. Or was it because he looked over at you as though he knew you? I've seen that look on his face many times, the one that expresses an innocent hope that a stranger will smile back and say hi. 

The lights finally off, a few folks responded with happy hoots and hollers. And when your parents couldn’t tolerate your rude behavior any longer, your dad switched his seat for yours. I have to hand it to you; it was swift, it was smooth, almost seamless really.

I looked over at him, wondering if I’d sized up the situation incorrectly, but this kind of thing is sadly familiar.  He kept his eyes trained on that screen  like his life depended on it.  I glanced at him several more times over the course of those two hours. He must have felt my eyes on him but didn’t let on. Embarrassment has that effect sometimes. But the effect you had on me is the reason for this letter.

I am not angry or upset with you. You’re young, just like I was once. And I will not be able to impress upon you the lessons your parents have failed to teach you, because you know everything, like lots of people your age. You don’t have to like my son, talk to him, interact in any way. But you do have to remember that he is a person, and I am his mother, with all the concomitant love and devotion that relationship entails. I love him the way your mother loves you. I will always defend him and I will never apologize for him.

Now that I have that out of the way, I want you to know your behavior made me sad.  It’s an awful thing, to feel as though we are not welcome. Thank goodness my son was oblivious to what happened right next to him. The funny thing is if he had understood, he’d have forgiven you in an instant.

On our way home that night, I thought about how important it is for me to maintain my optimism. Here is what I hope for you:  that your parents will start a conversation with you about who you should rightfully fear and who you need not fear; that you will come to understand that over the course of your life, people like my son are more like you than unlike you; that when you go to school, your teachers will welcome classmates of all abilities from whom you can learn; that when you grow up and leave your family, you’ll find community with the sort of people who would never switch seats; that you will find the depth of understanding your intolerance, and decide instead to be kind.

Remember Donald? My fear and avoidance of him was completely unfounded. According to the people who knew him, Donald was very religious and personable, an intelligent guy with a talent for photography. His friends called him Donny. I wanted you to know that, because I’m ashamed to have avoided and feared someone because of his outward appearance.

My biggest wish is for you to be challenged again and again as you grow up, until you understand that your character is your most attractive quality, not your hair or your jeans or your pink pow lipstick. I wish this with the kindest of intentions, because I wouldn’t want you to miss out on knowing someone as awesome as my son.

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.

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

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.

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

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.