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.