Roberta F. King

Author site for the memoir, He Plays a Harp and other writing by Roberta F. King

10 November
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To Cleveland and Back

It was probably 15 years ago, maybe longer. I was pushing Noah in his wheelchair into our church. We were members there, recent converts, both Noah and me. And our daughter, Tasha, a foster kid that we adopted, had her First Communion there, too. People knew us and we were comfortable with the wheelchair and how to maneuver to take Noah to the altar for communion.

One Sunday, as we trundled to our usual pew, right inside the door, eight rows back from the front we passed a kid and he made a gesture with his arm, crooking up his wrist and pulling it close to his face. He made a grimace, stretching out his mouth at the same time. I knew immediately what he was doing—he was making mocking my child. Noah had Cerebral Palsy and the gestures that the boy made were clearly Noah’s. I flushed with anger as we sat down. I helped Noah take off his jacket, crossed myself, sat in the pew smoldering.

“He made fun of my son, that little punk,” I thought. Within a minute or so, I popped up from my seat and tapped him on the shoulder.

“If you ever, ever make fun of my son, again, I’ll kick your ass from here to Cleveland and back,” I whispered in his ear.

He looked surprised and slid toward his mother. I’m not sure if it was the threat of ass-kicking or the geography that caught his attention.

“I didn’t do anything,” he said.

“Yes you did, and I saw it. You made fun of his hands and his face.”

He looked at his lap.

“Don’t ever, even think of doing that to Noah again. Or I will kick your ass.”

“Sorry,” he mumbled. His mother looked over, only slightly alarmed.

I returned to the pew.

“What happened mom?” Tasha asked, she had missed the whole thing.

“Oh, that kid up there was making fun of Noah.”

“What did you say?”

“I just told him to stop it.”

Tears formed in her eyes. “He made fun of Noah, that’s mean,” she said.

“I know. But it’s over, don’t worry about it.”

Fast forward to the present. Tasha is 22 and Noah has been dead for almost 11 years. But there are some things that stick. Tasha, who can’t seem to remember much, due to her cognitive impairment, clearly remembered the mocking incident.

“Will dad take me to vote this year?” she asked.

“It depends on who you’re voting for,” I teased.

“Hillary Clinton,” she said without hesitation.

“Donald Trump makes fun of people with disabilities, like Noah,” she said. “I saw him on TV, doing just what that kid did at church. That just makes me so mad. Making fun of people like Noah, is wrong. I’m voting for Hillary Clinton.”

Mocking people with disabilities is something that most of us stopped doing in elementary school. But, not President-elect Trump. He mocked a disabled reporter with sound and gesture—and he was caught on camera for us to see over and again. It’s an image that makes us squirm because we know it’s immature, cruel and unfair. How can any adult, especially a parent do such a thing?

She voted on November 8 and proudly told me about the experience.

“Noah would be happy to know you voted for Hillary,” I surmised.

I called her at her group home the morning after the election to talk about the results. I read about other parents in my social media feed, struggling to tell their kids the news and thought she might need some reassurance.

“Hey, it’s me. Did you hear about the election?”

“I know, Mom. I got up first thing this morning and the staff told me Donald Trump won. I’m very sad today. Why did he win? Don’t they know that he makes fun of people like Noah, people with disabilities? He’s a bully.”

I don’t have a good answer for her as to why he won, not an answer she’ll understand. I don’t fully understand why so many people stand with, voted for and now defend someone who says and does the things he does. No one escapes his bitter and cruel remarks—not women, not Muslims, not Mexicans, veterans or people with disabilities. Is he like this because his moral compass is askew? Or perhaps no adult bothered to teach him right from wrong during his privileged childhood. Or worse, there wasn’t a caring mother around to offer to kick his ass to Cleveland and back.

23 September
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Birthday. Not Birthday.

I wouldn’t want to do the math wrong and make a mistake about how old he’d be today, so I pull up the calculator on my laptop just to make sure. Noah was born on September 23, 1988 so today he would be 28 years old. Without ritual it’s hard for me to remember his exact age. When you take away the cake, singing, presents, dinner out and the old Scooby Doo birthday banner; the marking of another year becomes nebulous.

I’ve lost my ability to imagine what Noah would look like as an adult. I guess he’d still be very thin, tallish and he’d have a good head of sandy curly hair; men from my side hold onto their hair. But that’s as far as I can take that vision.

I have a better mental picture of what his day-to-day life would be like had he lived—it was something we were looking ahead at, preparing for, like gazing down the highway a half mile or so, to see what the traffic is doing. I expect that he’d be living away from us by now, probably in a group home with other young men with disabilities. He would have aged out of educational programming two years ago, so he might have a job somewhere. He worked at Meijer for a bit in high school–he might have stayed on there, slapping circulars in the hands of incoming shoppers. I imagine that we’d still travel together down to the Keys in the winter and maybe he’d drink a beer with us.

Bleeding HeartsAll too infrequently, Noah visits me in my dreams and when he does, he’s never older than he was when he died. He visited once as a fully mobile person and walked right up to me. In that dream, I was awestruck by his ability to move on his own, “Noah, you’re walking!” I said. His gait seemed a little stiff, perhaps from all those years of sitting in his wheelchair. In that dream, he just smiled his crooked smile and then walked away without me.

Maybe I can’t envision him growing older because he isn’t any older, he’s stuck at 17. Today isn’t really his 28th birthday—Noah ceased to age on the day he took his last breath.

Today is, more accurately, the anniversary of his birth-day.

So, it has been 28 years since we first brought him into the world and 10 years, 7 months since he left us. It’s all just time, an ancient measurement system based on the movement of the sun and the moon, and it truly  passes like a white hot flash. Those 28 years, those 10 years are just gone.

What give me the worst sort of ache though, is the sense of drifting from him that I feel. I still miss him every minute of each day, but his presence, which used to be so powerful, is fading and like the passing of time, there’s no way to bring him back.

09 July
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Summer Camp and Love

Just out of Marquette, past Northern Michigan University’s wooden Superior Dome, there’s a turn to County Road 550. That’s where I’d move to the back seat of the van to sit next to Noah and hold his hand. Mike would drive and we’d pass Phil’s 550 Store, cottages, homes and the occasional rustic resort cabin complex while a Jimmy Buffett CD played to make the mood lighter. Noah loved going to camp and being there would be the highlight of his year, it was something we’d talk about for months before he went and after he returned. But leaving him at Bay Cliff Health Camp and saying goodbye for the summer was never easy and even after five years of camp, drop off day was hard on me. On Noah, not so much. He was stoic, solemn but the minute we drove up the camp gate, he was wiggling with excitement.

Noah in the camp pool.

Noah in the camp pool.

Bay Cliff is a therapy camp, designed and operated since 1934 for children and teens with a variety of disabilities. The camp focuses on therapy, physical, occupational and speech as well as programs for the blind and hearing impaired. Each summer session is eight weeks, designed to accomplish a camper’s therapy goals.

As tough as it was to part from Noah at camp, he always came home better than we left him. He was stronger, more independent, talked with more volume and was more observant.

Picking him up each August, Mike and I would rise at 4 am (we stayed in Big Bay the night before) and be first in line for pick ups. Over the loudspeaker they’d call each camper’s name, “Noah Miesch come on down!” and we’d anxiously scan the grounds waiting for Noah to wheel his way to us. After the first summer I expected him to be consumed with loneliness and longing for us.

“Can I come back next year?” he asked.

I was almost speechless.

Where was Mom, I missed you and Dad so much or I’m so happy to see you. He’d separated from us so cleanly.

“Well, can I?” he asked again.

“It was that much fun?”

“I love Bay Cliff,” he said.

“Then, I guess we’ll have to work on getting you back next summer,” Mike said. “What did you do all summer?”

“Therapy. Swimming in the pool. Had a parade. Ate goulash. Motorcycles came up and Indian dancers,” said Noah.

He started chuckling out loud. “I told a joke,” he said.

“To whom?”

“My therapy group. I told them,” he said.

“Tell us,” Mike said. “Noah has a joke.”

“Why don’t cannibals eat clowns?” Noah said, trying not to laugh and mess up the joke.

“Why?” Mike and I said in unison.

“Because they taste funny!” Noah grinned.

We laughed loud and hard. It was a big accomplishment for Noah to tell an entire joke.

Every June now I remember the ten hour drive from Muskegon to the middle of the Upper Peninsula and the solemn drive up County Road 550 holding my son’s clammy hand and how I tried to make sure he didn’t see me cry.

I think of Noah, now dead, with a bits of his ashes spread near his old Bay Cliff cabin and I rejoice for the Michigan summers and happy memories of days at camp.

Noah (center) at Bay Cliff Health Camp.

Noah (center) at Bay Cliff Health Camp

 

Noah dressed as mashed potatoes for the Independence Day parade in Big Bay.

Noah dressed as mashed potatoes for the Independence Day parade in Big Bay.

30 December
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Poking the Wound

One of my classmates in my online writing class mentioned a book she thought I’d like to read, Far from the Tree by Andrew Solomon and I’m pleased that she did.

Noah had a volunteer job at Meijer handing out fliers. He thought it was fun and people would often tell us they’d see him at work.

The book is about parents, children and how their identities are wrapped around one another. His focus is on parents with children who are not “vertical”or similar to their parents. He writes about kids who are deaf, dwarfs, have autism, are prodigies, become killers, are disabled or otherwise very different their parents–kids who are horizontal. Kids who are far from the parental tree. The book is comprehensive, with more than 600 pages (900 including the notes, bibliography and index) and is such interesting reading. He delves deep into the relationship between kids who are different than their parents. He interviews people who are brutally and graphically honest about these differences and how difficult it can be to love a child that is different or to be the child that is different. Solomon and the people he talks with don’t hold back or sugarcoat what life is like when there is difference. The pictures they paint of their kids and the relationships aren’t always what people want to believe happens in life. Even to someone who parented two kids with disabilities, I had to pause and think about the parents (and kids) in his book who faced challenges many times greater than my own. Also, they were saying things about their feelings and their kids that I’ve known to be true about Noah, but avoided altogether as I’ve written my memoir. I’ve come to realize that I’ve been protecting Noah, but not for any good reason. I just didn’t want readers to not love him because he was cognitively impaired. Because Mike and I were around him so much, we understood him, we realized he had a special intelligence that couldn’t be quantified by an IQ test. We knew it, we could see and feel it. But, the reality was, he had a significant intellectual impairment. At present, my memoir circles around this important fact. To tell his story honestly, it can’t just about the wheelchair, it’s about the brain, too.

Ouch.

Poking the wound, pressing where it hurts is what makes writing memorable and real. For my memoir be successful, I need to write about all of Noah. My manuscript will undergo one last revision and in it, I’ll to dig a little deeper and press it where it hurts to draw the readers in and to be true to Noah’s real character.