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!”