Roberta F. King

Author site for the memoir, He Plays a Harp

05 February
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Being That Person

There comes a time in your life that you are that person. The person that knows someone well, maybe better than anyone else, and you know it will be you who has deliver the eulogy when that person dies. I volunteered for the job, to deliver the eulogy for my friend Phil Chmura. I didn’t wait to be asked, because sometimes you just have to be brave, step up and say what has to be said. In our lives, where relationships can be virtual and thin, it is a honor to have deep and long lasting friendships, as I did with Phil.

This is the text of my tribute from his service last week.

Phil, in December 2016.

Phil, December 2016 at Donkey

“There is a part of me, most of me actually, that can’t believe my friend Phil is dead. Just 12 hours before he had his stroke and began to die, we sat around our kitchen table, listened to music, ate bean tacos and drank some beers. It was a pretty normal night, other than the elephant in the room—his brain cancer. We talked about it in generalities—he was glad the radiation was over and was happy to be back home, he was concerned that his hair was falling out and he was hopeful about the immunotherapy that would begin in a week or so.

Every day after his Melanoma diagnosis, just like normal, we talked, texted or emailed. Our conversations were upbeat, oddly so. I never remember Phil being so positive. I began to believe, truly and honestly that he would survive this cancer. We talked about that often—about believing that medicine and science would provide a solution. I had faith, because ­he believed he’d get better.

But that didn’t happen and my best friend died.

In writing his obituary I realized, I really didn’t know Phil that well. Most obituaries have a birth and death date, an education and work history and a list of hobbies. I didn’t know, until after he died how old he was, I had to ask his sister. Age didn’t matter to him.

I knew that Phil went to Catholic schools and a bunch of colleges—Muskegon Community College was his favorite—he was a perennial student there. Did he ever get a degree from MCC? He probably never bothered to fill out the paperwork—learning for the sake of personal inquiry was more his style.

He lived in a few places outside Michigan and I threw him at least two going away parties—but he always came back home. And when he lived away—he was gone from my life. We’d write occasional letters or send postcards, but that was all. Eventually, he’d show up back in Muskegon and we’d resume our friendship.

Phil worked on and off during the time I knew him—he took a few drafting classes at MCC—he told me once that he didn’t like drafting much, but was pretty good at it, and drafting jobs paid the bills. When he was out of work or between apartment leases, he lived with my husband Pook and me, for a few months at a pop. There was always space for Phil in our house.

Me, Pook and Phil

Me, Pook and Phil at Burning Foot

One of the things I loved about Phil was that he rarely told me no. I can’t say I made a lot of unreasonable requests—foot massages, babysitting our son in a pinch, dog sitting all four of our dogs over 30 years of friendship, grabbing a six pack of beer if he was headed our way, a long bike ride around Muskegon Lake on a Sunday morning, a cake for dessert, taking our present dog, Lucy, to the veterinarian for emergencies, a butt squeezing or her shots. He volunteered to poke my black and throbbing toenail with a red-hot needle. He assured me he knew what he was doing, “My mom is a nurse,” he said. He did me a solid with that hot needle.

I might have met Phil on quarter beer night at JP Allen’s, or perhaps it was it the night that Bobby Packingham’s art exhibition opened at the bar. I know for sure that it was at JP Allen’s, that old place downtown, now long gone. I remember standing with Phil, and Pook and looking at Bobby’s art before we settled into that big side booth where six friends could comfortably sit. There would be three pieces of art that booth, one on each wall. It’s funny now, to think of art—good art—hanging in a packed, smoky bar. But that’s how things were when I met Phil.

Phil was my intellectual and literary companion. He would scour library, estate and yard sales for books for first editions or other books that he thought I’d like. He’d strike up Twitter conversations with well-known authors, Susan Orlean, specifically and send me phone pictures of their Tweets. A few times a week he’d email me articles about something one of us was interested in—articles about Frida Kahlo or other artists we loved, new books by good authors, politics, conspiracy theories, music and pop culture that involved Madonna or Barbie. We swapped and shared books and he helped stock my Little Free Library. At least once a year, we would drink and talk about driving to Montana and arranging an accidental/on purpose meeting with author Jim Harrison—and when Jim died and so did that scheme.

Phil and our dog Lucy

Phil and our dog Lucy

To me he was always Philbert, but also Spill, Phil-in, Philanderer, Philosophy, Phildirt and others. He was my Phil-in when I ran for Mrs. Asparagus in 1989. When Mike was in the hospital having spine surgery, Phil went with me to the Shelby High School Cafetorium and escorted me into the program where I was introduced as “Roberta King, wife of Mike Miesch, escorted by Phil Chmura.” I was lucky to be named runner up. We called him Spill because when we were painting our first house he took a full gallon of paint up a ladder to paint the eves—and dropped it. Boom. Paint everywhere. After we recovered from the mess and the loss of $10 of Sears house paint, we just laughed.

There’s one thing that Phil did, for which I will always be grateful. Last spring he started bugging Pook about taking a drawing class at MCC with him. Phil was never much of a pesterer, it wasn’t in his hippie nature to nag. But he brought up the art class enough times that Pook finally agreed to enroll. It had been maybe two decades since Pook had done any serious drawing, but off to MCC he and Phil went—and drawing began again. Two days a week for three hours they attended class and made art until Phil got sick. I thank Phil every time Pook takes out a piece of paper and starts to draw.

We’re here today because of art—this Museum and the people here gave Phil great pleasure and meaning in his life. While I didn’t think of it before he died, art was one of the things that was always present in our friendship—from JP Allen’s to MCC to those odd performance shows we went to in people’s garages to author readings and art exhibitions here—the red thread of art kept us together.

According to myths in both Chinese and Japanese cultures, the gods tie an invisible red cord around the ankles of people that are destined to meet and be together. People with red cords are meant to authentic friends, even soulmates, regardless of place, time, or circumstances. This mystical red cord that binds two people is believed to tangle or stretch but never, ever breaks. Death does not break the red cord.

In your program, there’s a red cord. Take it and use it to remember our friend Phil. Wear it on your wrist or your ankle, use it as a bookmark or tie your keys with it. And when you see that material reminder of Phil, think of what he meant to you and the connection that death cannot defeat.”

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.

13 January
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Book Grouping

Through people I know or people who know people, I’ve been invited to talk with a few book groups over the last half year. I’d envisioned book groups as part of my author’s role and believe that if there’s six or so people who have all bought or borrowed my book, I should make an effort to be present with them. The relational nature of He Plays a Harp also lends itself to intimate discussions like those in a book group.

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My boss Diana and her friend Jeanne.

My boss hosted an elaborate dinner party for her book group. There were eight women at her house and they asked thoughtful and probing questions, before, during and after dinner. It was a little bit like Trivial Pursuit, I sat with them working my memory hard to recall the specific chapters or sections they were talking about and my motivation and thought process for the choices I made some five years ago. A book group isn’t a place where you can dodge a response or give the short answer, your audience is right next to you on the sofa or across the dining room table. When things got quiet among the members, I offered to read, picking one of the book’s short chapters.

My high school English teacher, Mr. Schelhaas suggested my book to a group he knew that had been reading together for more than 30 years. Five older ladies and I drank wine and snacked on cheese before a soup and bread lunch. We played Dutch BINGO to see who knew who and how. I learned that a few of the women lived a street away from my childhood home, one taught choir at my former high school and most were family friends, Aunts or neighbors of kids I went to school with. I enjoyed the connection. They told me they were grateful for the honesty of my book and appreciated that I didn’t hide any of the bad and ugly parts of Noah’s life and death. The readers specifically mentioned the strength of my relationship with Mike. It was wonderful to know that even without writing it purposefully, I’d shown the depth of our marriage and Mike’s personal character. I read them a chapter I’d never read aloud before, that was mostly about Mike and I tried not to choke. It made me proud that they could see what a great dad he had been to Noah. The ladies and I talked about faith and loss. I said books and stories where people are hurt, pray and magically recover seem fake to me. “Maybe I’m not a believer in the quick fix.” I don’t know if they agreed.

Must Love Dogs Book Group

Must Love Dogs book group

My friend Juanita’s group consisted of writers around my same age—like me, they were public relations and marketing types. We met in a noisy restaurant over supper and half off wine. We talked about motivation, finding time to write and read; process, publication challenges, writing classes vs. groups, platforms and all that writerly minutiae that authors love to talk about. Several of the women had books in progress or almost completed projects that sounded worthy of publication. It was fun to pretend I was an expert as I shared the story of how He Plays a Harp came to be a book, but I didn’t read for them.

 

If you are in a book group and would like to read and discuss He Plays a Harp, please contact me at: he.plays.a.harp@gmail.com

26 October
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Days of the Dead

Papier mache skull for Noah’s shrine.

I made my first shrine for Noah on a Sunday afternoon ten months after his death. At Mass that All Saints Day morning, I was shaken from my reverie when our priest read the names of parishioners who’d died that year. “Noah William Miesch,” he said. Noah was included on a list of people I only vaguely knew, older people mostly shut-ins and the very ill whose names I’d seen week after week in the parish bulletin. That day we were urged to remember our dead loved ones, so I came home from church and built a shrine on the kitchen cupboard with a box of pasta, a photograph of Noah and a SpongeBob toy.

Over the last eight years, I’ve created increasingly elaborate shrines for Noah and incorporated some traditional Dias de los Muertos objects—mostly skulls and skeletons—which Noah liked. Oddly, the last Halloween Noah was alive we were at Mackinac Island and he dressed as a skeleton for the festivities there. I place that ironic photograph on the shrine each year. Day of the Dead celebrates the lives of people who have died, not that they are dead. This is the message I tell people who are interested in my book, too.

I’m careful to not commandeer this holiday, being sensitive that my ethnic heritage is mostly Swedish, not Mexican. I think respectful cultural appropriation is okay—it’s part of being a citizen of the world and forming relationships with people who are different than me. Adopting cultural traditions is part of being inclusive and being included.

I’m happy to share that I’ve created a shrine for Noah that will be on view at Grand Rapids Public Library starting October 29. There are a lot of shrines at the library each year and I hope you’ll take the time to stop by to see them. On Saturday, November 1 at 1:30 PM, I’ll talk about my altar along with with other altar-makers and I’ll be reading a bit from my memoir He Plays a Harp, too. Come celebrate.

Photo of Noah as a skeleton. He’s with Mike and Tasha.

23 September
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The Right Fit

I like finding signs in life. It pleases me when the cosmos give me a hint that things are aligned, or not. A year ago today, I designated September 23 as “Manuscript Pitch Day.” It would have been Noah’s 25th birthday and I took the day off from work. The day was to be devoted to sending my manuscript to the world, in hopes of publication.

When He Plays a Harp was published, Principia brought me a box.

When He Plays a Harp was published, Principia brought me a box.

I’d long prepared for this day: revising, editing, engaging pre-readers and reading dozens of literary agent and small press blogs. I dove deep into tips and editor/agent interviews in publications like Poets & Writers and Writer’s Digest. I created a list of 50 literary agents and made a spreadsheet of their query requirements. I wrote pitch letters that were personalized and charming. All along in this process, I held onto an article I’d read a year earlier in The Grand Rapids Press. It was about a local publishing company, a start up, called Principia Media. I read the company’s blog and was a Facebook follower. I felt a connection—they were politically progressive and our values were closely aligned. I hoped my book was for them.

The day I sent out my pitches, I braced myself for the onslaught of rejection that the magazines promised me would come. I kept hoping, though, that Principia would want to read my full manuscript, they just seemed right to me. While a New York agent and publisher would have been fine and the idea of fame was fun, I really wanted a company with whom I could form a long-term, genuine relationship. Someone who understood He Plays a Harp wasn’t a transactional book and while making money and selling books was important to me; connecting with readers was just as important.

We celebrated Noah’s 25th birthday that night by sending off a sky lantern. As the lantern blew across Muskegon Lake, I made a quick wish that my manuscript would find a home and become a book. It knew it would be the best way to honor Noah’s life.

The following days I obsessively checked my email for responses—and sure enough—rejections were coming in. Within a week though, I’d heard from two agents who was interested and one publisher—Principia. As soon as the manuscript was accepted by Principia, I contacted the agents who were still considering and told them I’d found a publisher. I’ve always felt it was better to reject before you’re rejected. I have no regrets about my decision to use a local small press publisher.

Working with Principia has brought some great people into my life. CEO Vern Jones and his wife Irene are as kind and compassionate as any two people I know; Dirk Wierenga brought a significant amount of book design, publishing and book distribution knowledge to the table and public relations director, Julie Hurley worked with local bookstores and wrote my first press release for me.

Everyone at Principia worked hard from the start to make sure He Plays a Harp was well edited, proofed, beautifully designed and readily available to readers. They’ve supported me with their presence and their commitment to me as an author. I feel a bond with them that I don’t think would exist if I’d found a publisher outside of Michigan or one who was more interested in making money than sharing Noah’s story.

21 July
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Member of the Tribe

It was a hotel with one thousand rooms, but even in that expanse, recognizing the bereaved parents was easy. We were the worried-looking people with name badges on blue lanyards and big photo buttons of our kids. Though we didn’t pack them, Mike and I had our big Noah buttons by noon the first day of the conference. A volunteer assembled the buttons onsite with a hand-operated button machine. Ours were made from a scan of a worn sixth grade picture that Mike carried in his wallet. I must have missed the memo about bringing a nice photo of your child to the conference for a big button and ours looked worn. Some parents wore two and even three buttons—one for each child that died. I can’t imagine that, which is just what people say to me when I tell them my son died.

So, in our own way, we chose to show our belonging to the group by what we wore. A big photo button and name tag badge with the name of our deceased child printed next to ours told everyone that we were part of the bereaved parents tribe.

Conference Goer from Across the Way

Conference Goer

Across the skywalk from the Hyatt Regency O’Hare where parents and siblings gathered for national conference of The Compassionate Friends (TCF), Exxxotica, the Largest Event in the USA Dedicated to Sex and Love was holding its annual show. They were easy to spot, too. The Exxxotica women wore bum-showing shorts or skirts, sometimes with leg warmers and stilettos or with thigh-high boots. They wore cinched up bustiers with bellybuttons showing, There was lots of black and hot pink clingy material and spangly sparkly tops. They showed inches and inches of cleavage and were generous with their colorful eye makeup and lipstick. They had plenty of ink, too. I spotted a leg length snake working its way from an ankle around the calf, up a thigh and up into the front of a short skirt. The men, for the most part, carried women’s stuff—bags of whatever people in the erotica industry need to have on hand. When you’re toddling around on seven-inch heels, you don’t need to be schlepping a heavy bag.

It was an odd mash up and I wonder about what the hotel conference planner must have been thinking at booking time.

The last night of the conference, I wanted to get a picture of one of the participants from Exxxotica. I needed proof of this unlikely convergence. Mike and I walked the musty and warm skywalk over to the Rosemont convention center after the closing candlelight ceremony for TCF. The skywalk was carpeted, which seemed to be contributing to the dank smell. We passed several possible photographic candidates, but they weren’t interesting enough. Finally, I spotted the one. She was at least six feet tall, but with her spiked heels it was hard to truly gauge her height. She was probably as old as me, and easily seventy pounds lighter. Her makeup was heavy and her expression worn. She’d probably been working a trade show booth since noon. I wondered if she was repping a line of dildos, or was it lube lotion, leather goods or videos? I didn’t ask.

“Hi, do you mind if I take your photo?”

“Sure,” she said cheerfully. She let go of the arm of the man who was escorting her. She smiled and posed against an unfinished trompe de l’oeil painting of a window. I took two images with my phone.

“I just wanted a photo, well, because we’re from the bereaved parents conference. We’re in the same hotel as you guys,” I said. “You know, bereaved parents and erotica in the same hotel. I just thought it was interesting,” I stammered.

Big photo button“Oh. So did we,” she said, nodding. “Who did you lose?”

I told her a bit about Noah’s life and death as we walked back toward the hotel. I was glad she asked, and we were happy to tell her about our son. She steadied herself on her companion’s arm and we fell behind them a few steps. We parted as the doors opened from the smelly skywalk opened to the marble floors of the hotel lobby. Her heels clicked as she and her companion strutted toward an elevator.

I’ve thought about this brief meeting and how the tribes we represented that weekend are on the fringe of what’s considered normal in American culture. Death and sex are two topics people are generally uncomfortable talking about. So here we were, parents celebrating the lives of our beloved dead children, mixed up with other adults reveling in their sexuality and simply looking at one another in wonder thinking: how do you do it?

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?

03 May
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A Second Goodbye

Broken

Broken

After four years of writing, revising and editing; making photo choices and reviewing page proofs I have a book in hand.

I love the feel of its soft touch paper cover, the typography is pleasing and the stories delight me as I re-read them. I have a handful of events planned and people seem excited to read it. This is what I worked for, right?

And I wonder why I don’t feel better, happier about this moment in time. I reached out to another author, Christine O’Hagen. She wrote The Book of Kehls, about the death of her son Jamie from Duchenne Muscular Dystrophy at the age of 24. After her book was published she had similar feelings. She wrote this to me: “The reason why you are not happier now is because you had Noah with you during the writing of the book, and now he is gone again. It took me a while to figure this out. The whole catharsis thing everyone in the world promised would happen – didn’t happen at all.”

Christine was right. For four years I held Noah close as I wrote. I thought about him hard, recalling scenes and moments that would help me create his character for the book. I held him closer than I had in many years and in the writing he became alive to me again.  Then, the writing ended. I had a sweet book on the way and I focused on other things. I felt emptiness return and the ongoing grief that had been tempered by writing was back. I’m missing Noah like I did in the early years after his death.

In the next few weeks I’m doing several readings and book signing events. I’m hoping to feel Noah’s presence as I introduce him to people that never knew him and share memories of him with our old friends.