Roberta F. King

Tolerance of Grief

Yesterday was the seventh anniversary of Noah’s death.

I admit, the pain of his loss isn’t as acute as it was seven years ago. But still, when I think of him, I can feel the tightness in my throat and my eyes start to burn.

And I think about him every single day.

That’s the reality of this kind of loss. The grief hangs on and on. It’s become a part of me. As much as I am a writer, a runner, a public relations professional, a wife and a friend, I am a grieving person.  I don’t mind the sadness as much anymore, like running I’ve built up a tolerance to it. Just like going out to run five or ten miles, there’s effort, but not the pain I once knew.

A friend of mine pointed me to a poem by Emily Dickinson, I found the last line of it to be intriguing. It seems hopeful,  aspirational, but impossible.“First chill, then stupor, then the letting go.”

Her word choices describe the early bits of of death very well. I struggle with the letting go part, though. I don’t think letting go is something I’ll ever completely do when it comes to Noah. All that I have left of him are memories. Grief and memories are interconnected and without memories what would I grieve? I grieve as I remember the good times we had with Noah, eating supper, reading books, getting ready for school, the trips we took, celebrating holidays and how he looked, felt and smelled.

As long as I have memories of my son, I’ll have grief in my life. The letting go is something I don’t ever want to do.

One of my favorite images of Noah, we were boating in the Florida Keys. He was about 15 years old at the time.

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.

Nervous

This is one of several Christmas stories in my memoir.

Near Kalkaska we found this Nativity Scene and laid Noah down as a baby Jesus stand-in. He wasn’t happy, but couldn’t get up and get away. This photo has  nothing to do with this story, but I like it.

Noah loved Christmas and we fueled his passion with our own holiday hype. We’re super hall-deckers. There’s not a surface in our house that doesn’t have some piece of Christmas crud on it. Elves on shelves. A manger scene with a menagerie. In the bathroom a rooftop Kleenex box topper with a pulled tissue looks like chimney smoke. A bobble head Santa. Angels in high and low places. A super-groovy Christmas red wax lava lamp. We set up miniature figurines of the entire cast of Rudolph the Red Nose Reindeer accompanied by a large, animated Bumble with stiff white fur. Central to our celebration is a big, lit like Tokyo at night, fully-ornamented, set-up-the-day-after-Thanksgiving-until-Epiphany-or-St. Knut’s Day-fake tree.  At our house, Christmas is never a day, but a season.

***

Shortly after his late September birthday, Noah began his Christmas quizzing.

“How many more days to Christmas?” “How do reindeer fly?” “How many elves are there?” And the random, “Does Santa really love me?”

For years we played along. Mike and I liked the innocence and the imagination that surrounded Noah during the holidays. Even when he was in the third grade and someone told him (again) that there was no Santa, we acted shocked.

“What?! Who said that? They are in such trouble. If you don’t believe you won’t receive,” I said. “Santa-denying is a very bad thing.”

“Really?” said Noah.

“If you want to believe in Santa, that’s okay. Dad and I do, and you can too. You don’t have to go along with the kids at school. Believe what you want to believe.”  Noah was a little naïve, a little too trusting of his dad and I. He was born with cerebral palsy and relied on us, not only for his mobility and day-to-day care, and for much of his life information outside the classroom. Sometimes the worldview we provided was laced with imagination and irony.

Noah seemed suspicious, but was hesitant to question us too strongly on the chance of jeopardizing his relationship with Santa.

“When can I go see Santa?” he asked me at Halloween.

“That’s going to be awhile,” I said. “You have all of November and some of December. You don’t want to go too early because Santa could forget and you don’t want to go too late because he might be out of things. We have to time it just right,” I said.

“When’s that?” he said.

“Around December 10.”

Noah held me to that date, checking the days on the calendar after Thanksgiving. We’d see Santa out and about while shopping and he’d crane his neck as we wheeled by.

“Now? Can’t we go now?” he said.

“No. Not yet. Still too early.”

“Those kids are with Santa Claus.”

“Yes, they are. You’ll get your chance,” I said. “Do you have your list ready?”

“Not really.”

“Well, then. There you go. No need to see Santa today. Let’s get that list in shape,” I said.

We didn’t make a paper list. We just talked about the things Noah wanted and needed, and his job was to remember the list when he finally got to see Santa. “It’s more sincere that way,” I told him.

“Buzz Lightyear. Talking Woody. Racecar set. Charlie Brown DVDs,” he recited, working on his memorizing.

“All good stuff. How about some pajamas? A new jacket? How about some underwear? You can always use underwear,” I teased.

“No underwear,” he said. “I’m not asking Santa for that,” he said with disgust in his voice and a wrinkled nose.

The Saturday we headed to visit Santa was cold and clear, unusual for West Michigan which tends to be gloomy in the winter. The sun was out and there was a thin layer of new snow on the ground. We bundled Noah in a jacket and mittens and loaded him and his wheelchair into the back of the van.

“Are you ready to talk with Santa?” I asked.

“I’m nervous,” Noah said.

“Don’t be. It’ll be fine. Just remember your list. And be polite,” I said.

“I’m nervous.”

He looked nervous; his face was flushed and slightly sweaty. Perhaps I’d put too much pressure on him with memorizing the list and all.

“Dad and I’ll be there with you. There’s nothing to be concerned about,” I said.

As we stood near the mall’s North Pole chalet, an authentic-looking Santa motioned toward us with a white-gloved hand. We looked around, up and down the line, not quite knowing for sure who was getting the wave. Santa sent a helper to fetch Noah.

“Come on up here,” she said. “Santa says he’s been waiting to see you.”

Noah’s eyes widened and he sat up tall in his wheelchair. His involuntary startle reflexes took over and his feet kicked the footplate of his chair and his hand flung out to the side. “It’s okay, Noah,” I said. I looked at the helper. “He can’t help the flailing.”

She smiled and we pushed on up to Santa.

He came down from his Santa chair and knelt close to Noah, putting his arm around the back of the wheelchair asking his name. “Noah,” he whispered. Santa’s hearing must have been excellent.

“Well, Noah,” he said in a normal, not too ho-ho or loud voice. “Have you been good this year?”

“Yes,” Noah squeaked.

“I thought so. What would you like for Christmas this year?”

Noah paused. His eyes gazed heavenward as he worked to recall his list, he bit his lip, his hand clenched and relaxed. A long stretch of seconds passed. It felt like hours to Mike and I.

“Well?” Santa said kindly.

Then, in voice loud enough for people to hear he blurted, “Underwear. I want underwear!”

Santa looked surprised. Mike and I laughed. Noah blushed and looked at his feet.

“Is that all?”

“Yes,” Noah said.

“That’s a good thing to want for Christmas,” Santa said. He was trying not to laugh. “I’m sure my elves can find some other presents for you, too,” he said.

Noah sighed. “Thanks.”

We thanked Santa, too.

“Wait, we need a picture of this young man with me,” he said. He wheeled Noah over near the painted backdrop of pine trees, a glowing cabin and snow.

“On the count of three, smile,” said the photographer.

With confidence he smiled, knowing, believing that Santa would take care of him.

Day of the Dead

Talking about Noah and his death has always been difficult, even as we are closing in on the seven year anniversary. By now, I should be more used to it, but even just thinking about him makes me start to cry and talking about him makes my voice catch.

Just the other day Mike and I went to our financial advisor to review our retirement investments. When I met with him (the advisor) for the first time, two years ago, he was new to our company’s retirement plan and I lied to him. He saw Noah’s picture on my desk and asked about it. I told him it was taken when Noah was seventeen, a few years before. He asked what he was doing now and I said he was attending Loyola University. The minute I said it I wanted to take it back. It was an outright lie and I knew it. Just like when I lied about the harp. Shameful. Wrong. And in this most recent meeting, since Mike was there with me I had to confess that Noah was dead and that I made Loyola up. As we talked I could see on his computer screen a little column, Son, Noah, Loyola University-Chicago. It was embarrassing. I’d given Mike a heads up about the lie, and as I admitted it, he looked away.

Why was it so hard for me to just say “My son is dead.” or “That’s my son Noah who died in 2006.” Some of this reluctance comes from people’s (my own included) discomfort with death and then the additional discomfort of it being the death of a child. It is up to me though, to make people more comfortable. After all, it is my experience and my attitude that will drive the tone of the conversation.

Getting comfortable with death and celebrating the lives of our dead isn’t something that we do readily in American culture. Last year I wrote a story for The Rapidian about Day of the Dead and how it is celebrated here in West Michigan. In talking with my friend Eva Aguirre Cooper and going to a Dia de Los Muertos celebration at her house, I began a personal effort to try to make every day a day of the dead. I wanted to try to make an effort to not be afraid of  talking about Noah’s life and his death. His memory deserves my honesty.

Day of the Dead is about celebrating love and the people who matter most to us. I’ll celebrate Noah with this blog post and sharing photos of a Day of the Dead shrine I’ve created for him. And today and every day I’ll talk about him to anyone who asks.

Running and Writing

In September and October I ran two half marathons, one in Spring Lake, the other in Grand Rapids. I’m partial to this 13.1 mile distance for a couple of reasons. First, it takes me at least three miles to get warmed up. I hate 5k races for this reason. By the time I cross the finish line of a 5k I’m just getting started. Second, the 13.1 miles challenges me and gives me time to think. I don’t run with headphones because I can’t think clearly with all that music going on (I also can’t write with lyrical music playing; orchestra music, yes, but no singing). I construct some of my best ideas, solutions to vexing problems and new ideas for stories when I run. If I run longer than 13.1 miles, I start to fade. By about 12 miles, I’ve thought all my thoughts and I just want to stop running.

Lately, I’ve observed that I have a comfortable word count, too. It is my 13.1 mile run of writing–1600 words. About half of the chapters in my memoir-to-be end at 1600 words. When I write fewer words, I feel like I’m not quite there and when I write more, I feel like I need to be more concise. As with running though, I sometimes need to push and take a subject further, recently I wrote about Noah and his feeding tube, a 2200 word piece.  It tells an important realization by Mike and I in his life and health. One, I wish we’d come to sooner. I’m writing essays for my UCLA Extension writing class now and the instructor likes our work to be 400-800 words, which is even more difficult. It has forced me to make choices about details and dialogue; cutting and revising.

Being comfortable in my writing (and running) is satisfying, but facing new a new challenge keeps me thinking boldly, believing in myself and in the story I have to tell.

Birth Day

Today would have been Noah’s 24th birthday. To note the occasion I’m posting a short piece from my memoir about the day he was born.

Birth Day

“Hello Love.”

Noah blinked his dark eyes.

I’d planned to say “Hello Love” for months. I wanted my first words to him to be memorable. They would become part of a story to tell him as he grew up.  While pregnant, I daydreamed that on his birthday each year, we’d go out for lunch and he’d say, “Mom, tell me about the day I was born.” And I’d say, “The first words I ever spoke to you were, Hello Love.”

So, I chose the simple words from the Garrison Keillor song that opened Prairie Home Companion each week. I wanted to sing a line or two from the song, but the anesthesia from the emergency C-section scrambled my mind. Noah decided to arrive a month before his due date. He weighed just four pounds, nine ounces.

**

My husband Mike traipsed into the operating room wearing surgical scrubs. The doctor and I were waiting; he was keeping an eye on Noah’s intrauterine vitals, which were weak. Time was running out and the delivery needed to begin.

“There’s a toilet paper tail on your foot,” I said.

He looked down and used his other foot to remove it. We laughed.

“Sit right there, Mike,” Dr. Karnes said, pointing to a wheeled stool near my head.

“I peeked over the top of the sheet,” Mike said to me. “I almost fainted. It was yellow and bloody,” he said about the small incision and gaping flesh hole from which they took the baby.

“Thanks for sharing that,” I said. We laughed again—it was nervous laughter—we were scared by this unexpected turn of events.

Time compressed, expanded and mashed up from incision to birth, like a time-lapse film. I faded in and out under the anesthesia as wavy, watery people came and went from the OR and recovery rooms. I heard familiar voices Mike, Dr. Karnes and the nurses were all talking. I didn’t know which room I was in at what time or even where Noah was. It might have been a few minutes or a few hours, I can’t say for certain.

**

Noah was sleeping was on my chest, my head and shoulders were propped up with two pillows so I could see this brand new tiny boy. He was wrinkled and darker than I expected. His hands were clenched up near his head.  There wasn’t a sign of the blonde curls that would become one of his most distinguishing features—just a few wisps of light brown hair. I rested my cheek on the top of his head; it was warm and smelled sweet and tangy, like yogurt. He looked a little troubled; a furrow lined his brow.

“Don’t worry Noah,” I whispered.

I would worry for him and about him, this tiny sweet creature, so new to the world, so new to us.

I tried to think of something more comforting to say—but could not—so I kissed him instead.

My Revisionist History

As much as I hate getting rid of the good stuff I’ve written, I’ve found revising and rewriting to be a satisfying experience.

One of the most pleasant aspects of the work is revisiting older pieces of writing–pieces that were written a year or more ago. I’m sometimes surprised at how much I like them. I also can see where they are lacking detail, dialogue or logical sequence. I also find paragraphs that are odd, awkward and just don’t fit with the story I’ve written despite my fondness for them, I kn ow they have to go. I keep a document titled Excess Copy. It contains sentences that didn’t quite work, short pieces of narrative that are interesting, but don’t quite move the story along and a few half completed essays that seemed like good ideas at the time, but didn’t develop or grow quite right.

So far, I’ve revised all of Noah’s life stories and one from after his death. That means I’m about halfway through the revision process. I asked my author friend, Adam Schuitema when he knew something was done–that it didn’t need more revision. He told me when his short stories are published, they’re done. I think that’s great advice and until more of my pieces find homes in literary journals or as a book, I’ll continue to revise and refine.

Until Another Story Appears

Last night I completed the final story in my memoir. At least I think it is the final story.

When I first wrote Fearless, on the fifth anniversary of Noah’s death, I wasn’t planning to write a book. I just wanted people to know the story of his death and what it felt like to lose a child. The Rapidian gave me a voice and a platform for that essay. People who read Fearless, especially the students in my 2011 memoir class at the Iowa Summer Writing Festival told me they wanted to know more about Noah and his life. My good friend and author Paula Nangle also encouraged me to write about Noah and to not focus my writing entirely on his death and the aftermath of loss. Now, less than two years later my manuscript draft is done. At present there are thirty four chapters, fifteen about Noah’s life, fifteen that take place after his death and four about his death. Some bridge life and death; others bridge life and loss. Some are funny, most are sad. I hope none of it is too sentimental. I believe it is an interesting collection of writing about children, family, disability, grief and most of all, love.

I’m re-writing and revising it now, going back to some very early stories and seeing if they still bear up. I’m trying to organize it in a logical manner for potential readers. While I think it is done, I’m also aware that Noah might bring me another story to write.

A Week of Writing

When writers start to seek publication for their work, we’re told that rejection is something we must be able to accept. It is a reality of the trade. I, too, have learned that rejection is more frequent than acceptance. That’s just numbers, there are a lot of writers and not as many places for writing to be published. Yet, it is still (always) painful and no one likes receiving an email that starts something like this: “unfortunately we are unable to accept…” Accept you into our writer’s workshop or your piece in our literary journal.

Earlier this year, I was rejected from a writer’s workshop that I had my heart set on attending. It was aspirational, I’ll admit. It was a long shot of epic magnitude and I knew that, too. I gave it my best and didn’t get in. On the bright side, I didn’t have to spend $840 on tuition and another $400 on a cross-country plane ticket. (Luckily I have friends with a cabin nearby, so the housing would have been free) (and I’m sorry I’m missing them).

My consolation prize was a good one. At a fundraising event for The Rapidian I was the successful bidder on a cottage. Located on Pickerel Lake in Newaygo County, it is an hour from my home and it has provided the solitude for writing I needed. It cost me less than the airfare across the US. In addition to the cottage, there is a little boat house, with electricity and a straight on view of the lake. It has been my writing space for a week. It has been a very productive week for me. I like seeing water, I need a quiet place and I need to be able to focus.

I set out to accomplish what I needed to do, I have completed the first draft of my memoir and am beginning to revise and re-write existing sections.

It would have been great to be in a community of impressive writers in a very sexy location right now, but that time will come one day. Until then I’ll take this view.