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.

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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.