Roberta F. King

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

Archive for the 'Disability' Category

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.

29 June
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Up North Book Tour

Okay, so it wasn’t the greatest idea to schedule a book tour around the Fourth of July holiday.

At the time, it made sense. I wanted to be in the town of Big Bay for the Independence Day parade that Bay Cliff Health Camp sponsors. The campers dress up and make elaborate costumes for the parade that celebrates their independence. Noah was in the parade when he was a camper and Big Cliff was an important part of his life. One chapter is about Bay Cliff and his camp experience is woven throughout He Plays a Harp. Combining a book event or two with the parade and visiting Bay Cliff seemed easy.

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.

In reality, making a Fourth of July book tour was a bit more challenging than I expected–some libraries and stores were already set with events for the summer–though I was working on this in early May. Some claimed to be too busy at this time of year, while others said they were too slow. This made me ponder, where do people who live Up North go in the summer? Do Yoopers come downstate to Muskegon, Grand Rapids or Detroit.  Do they go further north, to places like Winnipeg or Moosejaw? I’ll be finding out the answer to these and other vexing questions next week!
In the end, I secured FOUR book events:

Les Cheneaux Community Library 1:30 PM, on Tuesday, July 1. The library is in Cedarville. I’ll be reading and signing books.

Falling Rock Cafe and Bookstore 5-7 PM on Wednesday, July 2 The store is in Munising. I’ll be talking with readers and signing books.

We’ll be at the SAIL benefit concert at the Ore Dock Brewing Company in Marquette 6-9 PM on July 3. This benefit will help Upper Michigan citizens with disabilities. They’ll have books on hand before I arrive. A portion the proceeds from book sales will help SAIL with its programs.

Private reading for teen campers and staff at Bay Cliff Health Camp, July 5 after lunch.

If you’re a Yooper or a troll like me just up for a visit, stop in to the library or bookstore and say hello.

PS: If you subscribe to the St. Ignace News, there was a great article about the camp, book tour and Noah. Can’t wait to get my paper copy!

29 May
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Connectioning

I’ve found that one of the joys of reading He Plays a Harp is talking with people who come to my book events. I haven’t had that many events (yet) but at each, I meet people who have connected with my writing or my story.

Open

Open

Recently at Schuler Books, a young woman came for the reading and brought me a book to be signed. She was a bit teary and I asked her if she’d lost a child. “No,” she said, “but my son Colin has CP.” I asked her to stay after the signing so we could talk. Her son is 2 ½ years old and is in Grand Rapids for a session at the Conductive Learning Center. The six-week program of intense physical and occupational therapy helps kids with CP and other conditions gain strength and mobility. The mom was from California, her husband had just flown back home and she was staying for the therapy program. During the event I read a couple of stories about the severity of Noah’s disability—one about reading to him throughout his life because he never learned to read and another about an incident when Noah, despite his poor hand coordination, pulled a fire alarm at school. These stories perhaps foreshadowed her future with her son. She’s still coming the grips with the idea that she is raising a son with a severe disability—an emotional and heart-ripping situation when you don’t know what the future holds. Even with a non-disabled child, there is no sure and smooth path to the future, but that path is more stable and steady. Some kids with disabilities require constant care and attention and I think she knows that’s what her son will need. It is a heavy burden to carry—knowing that your child’s future is full of complications and physical, mental and social barriers physical.

I didn’t have any words of advice—other than you meet each moment as it comes and just do your best for you and your child. The fact that she was in Michigan from California for a six-week program showed me that whatever the future for Colin might hold, it was certain to be filled with tender care and motherly love.

Could anyone ask for anything more?

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.