By Kari Wagner-Peck
My book Not Always Happy: An Unusual Parenting Journey comes out on May 16. Yes—I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome.
I started the blog because I didn’t relate to much of what I was reading about Down syndrome. I didn’t fit the typical profile myself. I was 49 years old when I became a first-time mother, married to a man 14 years my junior. We adopted a boy with Down syndrome who was in foster care. I quickly realized if I wanted to read about someone like me, I would have to write it. I knew it would be funny, angry and not about how I felt about Down syndrome, but how Thorin felt about everything. About 60 per cent of the time I don’t actually write about Down syndrome. I write about us and have found that even with our quirks we are not that different than any family.
My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts.
Social justice narratives and social commentary are important
Social justice narratives and social commentary sounds stuffy, not fun and lecturing. Two things happened that made me not see them that way. When I was 12 years old two books showed up in my family’s bathroom: The Grass Is Always Greener by the Septic Tank by Erma Bombeck and Dick Gregory’s *igger. I read both within days of each other. I learned from Gregory that civil rights stories could be told in a personal, funny and sharp tone. From Bombeck I learned that the isolation of parenting in the status-conscious suburbs could be viewed in a good humored way—in spite of the fact that I was 12 and raised in a working class family.
At the beginning of this journey I justified my decision to write about Thorin because my narrative challenged existing perspectives about raising a child with a disability. I couldn’t relate to the idea of grieving a Thorin without Down syndrome. I objected to the notion that Thorin is an angel from heaven. I had no time for a laundry list of things Thorin will never do. This quote has been on my blog since day one: “I exist as I am, that is enough” from Walt Whitman’s Song of Myself. That was the premise. I told myself that by writing about Thorin I was helping to change the narrow view ascribed to all people with Down syndrome. I stick by that and I hope it is true.
Thorin is not emblematic of Down syndrome
I’m writing about Thorin to try to change a bigger world view about people with Down syndrome, but he is not a symbolic character. This one is trickier and thornier. I wrote about telling Thorin he had Down syndrome by explaining to him that he had a super power called Down syndrome and one of his powers was farting. I wanted him to know he was like everyone else.
Just days before our talk, Thorin, then 6, wore his Thor costume to the screening of the film Thor. If he loved My Pretty Pony as much as The Avengers I would have said he had a magic power and that’s likely how a Brony is created. Some mothers were reasonably upset because they assumed I was suggesting all people with Down syndrome have super powers. Some were also upset that I said farting was a super power. I should add that my husband thinks farting is a super power. Soon after I gave Thorin the genetic description of Down syndrome. He grew bored and utilized another super power by telling me to stop talking. Our original conversation would play out for years to come and in fact is the book’s epiphany.
The stories I choose to tell aren’t about Thorin’s Down syndrome but instead about who he is as an individual—his love of taking photographs, his obsession with The Avengers, his struggles with communication, his anger with being treated like a baby, his kleptomania and his storytelling abilities—take for example I Love You Eyeball Cheeseburger.
Thorin’s past is off limits
Thorin was placed in protective custody. That’s the most people know. One can assume that sort of thing doesn’t happen if a family has had a bad day, but when something harder and more tragic transpired. That information is at Thorin’s disposal when he is an adult. It isn’t for public consumption. Related to that is the fact that I want to be as respectful as possible of his biological family for Thorin’s sake. Thorin has made, for now, an evolved peace with his past that I cannot fathom, and with his “ex-mother,” as he refers to her. What I do share is the Byzantine process of state adoptions because it isn’t the typical story of family-making or even adoption. If you want a great story on how Dunkin Donuts Munchkins got us our adoption worker, you’ll have to read the book.
I do not write about my parenting frustration or wine consumption
I chose to be a parent at what is considered to be an advanced age. I didn’t expect it to be a picnic all the time or a shit show. I was grateful I had a chance to do what I had wanted for decades. My frustrations are mine. Same with all my relationships. My point of difference is not what an asshole my son is or how disappointed I am in my husband. Instead I write about my own perceptions and mistakes. I don’t find writing about parents who drink funny in general. That’s right I’m judgey. In fact I’m imperfect. I exist as I am. That’s enough.
Thorin has say in what I write about
In the early years of the blog I made those decisions for myself. Now I ask Thorin what I can write about. Consequently, I don’t write as much as I did. Lesson learned. He is a burgeoning tween—with feelings, experiences and ideas about what he does not want others to know. That’s his right and I respect it. He has crushes, but I’m not allowed to talk about on whom. He feels strongly, but I can’t always say about what. He has some ideas that are private. I’m doing a reading at a book launch party next week at a local bookstore. At first Thorin had said he wouldn’t go. When his best friend, Ella, said she wanted to attend, he said he would go but would leave while I read about him. Tonight leaving theatre class I asked, “Would you help me pick out what I read? Can I suggest stories and you decide?”
“Yes.”
“Do you think you will go outside with Daddy?”
“I do.”
Kari Wagner-Peck is a social worker and writer who homeschools her son Thorin in Portland, Maine. You can follow her at A Typical Son.
By Louise Kinross
Precious Cargo is a memoir by Craig Davidson about his year driving a school bus of students with disabilities—the iconic “short bus.” Craig, the author of Cataract City and a series of horror novels, took the job to make some money when his writing career fizzled. But he soon found himself struck by the unique characters of the five teens on his bus and his evolving relationship with them. “The way they looked at the world is so vital, so hilarious, so profound and heartbreaking from time to time, I knew I had to make a book about this,” he says. Precious Cargo is being published in May.
BLOOM: How would you describe the book?
Craig Davidson: Do you want my elevator pitch? Failed writer takes a job that he expected to simply fill the day and make a few dollars and ends up having a galvanizing, world-changing experience where some young people alter the way he looks at life.
BLOOM: Did you learn anything about disability that you weren’t expecting?
Craig Davidson: I think I came into it almost a total neophyte, so I learned so many things. I didn’t have anyone in my immediate or extended family that had cognitive or physical disabilities, so my experiences were kind of removed and remote.
It was a learning experience from the moment the first boy stepped on my bus. I think what I really came away with is that they’re just kids, which might seem a little facile. There were differences and they didn’t fade away, but they became much less factors of who I thought they were. Their conditions didn’t define them. It was much more their personality and all the other aspects of them.
BLOOM: Can you describe your relationship with the students?
Craig Davidson: I’d had bus drivers when I was growing up and they were kind of faceless entities. They weren’t mean, but they just got me to school and got me home. I thought that was kind of what I was going to be, but these kids were so talkative and so interesting and so willing to share themselves with each other and ultimately with me. It went from being a job to being friendships with each of those five kids and a more specific, off-the-bus friendship with Jake.
BLOOM: Jake’s is a powerful story. He’s a boy with cerebral palsy who was injured when a drunk driver hit him and his mother, killing his mom. The reader comes to care about Jake and the others because you describe them so vividly. Are you still in touch with Jake?
Craig Davidson: Yes. He still lives in Calgary and the last time I was out there we went out for dinner. He’s in university now, in English, still writing his books at his own pace. He’s 22 now, so in a different stage of life than when I drove him at age 16. He’s still Jake and he’s still lovely to sit down with. He’s a good friend and after a couple of years apart we’re soon back to our silly, ‘in’ jokes and thick as thieves.
BLOOM: What about the other students?
Craig Davidson: I’ve kept in touch, or am Facebook friends, with some of the others as well. I try to keep track of them, but not in a creepy way. I’m interested in their lives and whether they’re happy.
BLOOM: What was challenging about writing the book?
Craig Davidson: The most challenging part was recognizing that you’re dealing with real people. Until this book I was a novelist. You carry some love for the characters you create, but you recognize that while they might have aspects of people you know, they’re not those people. So here are five kids whose lives you want to detail as tenderly and delicately and fairly and compassionately as possible, and to juggle that with your own sense of what the experience meant to you. When you’re dealing with real people and real emotions it’s something you have to be very delicate at navigating.
BLOOM: You capture all of the students’ quirks, their personalities and even the dialogue. How did you do that? Did you keep a journal?
Craig Davidson: I tend to write stuff down on scraps of paper. Because Oliver and Jake and Gavin and Nadja and Vincent were saying such profound, hilarious things, I knew I had to take those down. They’re wonderful little gems that I wouldn’t have been able to summon up on my own. And I wanted it to be as close to what they actually said as possible.
BLOOM: It’s amazing that you were smart enough to do that early on.
Craig Davidson: I would have lost the exact phrasing if I hadn’t. I knew the way someone like Oliver looks at the world is gold, and I needed to save it.
BLOOM: The book is written in a very honest, candid way in terms of your own experiences.
Craig Davidson: Any writer wants a book to do many things. You want it to be touching hopefully, and funny, but in service of all of those things the main thing it has to be is honest, as you said. Honest with my own feelings, my own ignorance in many cases, and my own sense of unfairness.
BLOOM: You mean the injustice that these kids were born with disabilities and others aren’t?
Craig Davidson: Yes. I struggled for the longest time with whether I was being a downer, but the reader can tell if there’s some dishonesty going on there. I wanted to share my experience and all sorts of things that were fun, funny, heartbreaking and illuminating.
BLOOM: Do you think you’ll write about disability again?
Craig Davidson: I already have. Any writer would tell you that his or her experiences tend to feed into new work. My next book after this will be a short story collection. One story is about a bus driver who’s driving a girl with a disability.
BLOOM: Was there any hesitancy on the part of the publisher to producing a book about children with disabilities?
Craig Davidson: I wasn’t in on any of those conversations, so I hope they didn’t occur. The book hasn’t even come out yet and I’ve already had people approaching me to say that their sister, their brother, their wife’s cousin—someone in their family—has a special need. You realize that anything can happen in our development, and disability could happen to any one of us.
By Louise Kinross
In 2011, cartoonist Tom Hart was living an idyllic life in Gainesville, Florida. While his wife Leela, also a cartoonist, worked on a book, he spent time with his daughter Rosalie, not yet 2—bike-riding, visiting ducks in the pond, tracking the moon, painting watercolours on the back-porch.
Then Rosalie died suddenly and unexpectedly.
Tom did what he'd always done: he began writing, furiously, and then drawing, about it. His graphic memoir Rosalie Lightning was released last month.
BLOOM: How soon after Rosalie died did you start writing about it?
Tom Hart: I wrote to stay sane pretty instantly. When I wasn’t walking around the neighbourhood with my wife, or sort of lying down on the grass or in bed, I was writing mostly. In some cases it was just recording what was happening. More often it was trying to understand something and stave off despair.
We did a bit of travelling to get out of town—because town was so hurtful—so I kept the writing and the notebook going. After about five weeks I had a binder of notes. I felt it was time to stop, partly because I was repeating and partly because what happened at the end of the book was that this little girl came up to me, and that was a sign that I should stop writing.
I took some time off and then began the process of turning it into a narrative, and that took about three-and-a-half years.
BLOOM: What role did drawing and writing play in grieving for Rosalie?
Tom Hart: I’ve always used comics—this mixture of words and pictures and cartoons and boxes as a way to navigate the emotional world. Even as a child my first memory at age seven or eight is of tracing Peanuts—Charlie Brown. I later realized that I was really drawn to the emotional content: people were screaming and fighting and there was lots of punching. It was a way I learned to comprehend the larger emotional world. So unconsciously, throughout most of my life, I’ve always taken whatever I’m feeling and tried to wrestle with it on the page.
BLOOM: How did drawing help you focus on all of the details you wanted to remember about Rosalie?
Tom Hart: I wound up wanting to focus on how lively she was, and how the time up till she died was so fun and so magical. I wanted to recap it and recount it for people. It seemed strange, when I looked back at it, to want to draw all that stuff. In a way I think I was trying to summon her back. And again, since I have drawn cartoon characters for so long, it seemed like the most direct way to try to capture her spirit somehow, or to connect to her spirit.
BLOOM: What’s the main theme of the book?
Tom Hart: It’s trying to show a person’s mind as they work from a state of complete shock to some sort of comfort or integration with their new experience. Since reality has been so uprooted, it’s trying to find signs from outside of how to exist in this new reality, of how to work within a new world.
BLOOM: It seemed like the book was alternating back and forth between the beauty and pain that comes from the mystery of life. So on the one hand, we see Rosalie’s reactions of wonder to things like the 'big moon' or how acorns contain what will be a tree. But on the other, we feel your unbearable loss when she dies.
Tom Hart: It’s nice that you came away with that. I did the book very intuitively. Had I thought through what you just said ahead of time, it would have been a good structuring device. The world is big and full of joy and sorrow and bouncing or oscillating between the two is what I was trying to capture. In doing the book I really just followed my nose.
BLOOM: I think when a child has a disability, or an illness, or dies, it’s hard for parents to accept the random nature of it. In your book you go over the events immediately prior to Rosalie’s death. It seems like you’re trying to decipher the 'why' or the meaning of it. Was there a cause? Should you have anticipated it? Can you talk about that?
Tom Hart: The world is full of random, horrible circumstances and there’s not a lot of justice in the world. There’s not a larger justice in the world. To be honest, in my case I think I was able to do this book because it was so random. I think if she had had some prolonged illness, or worse, if there was a violent cause of her death, or someone to blame, I would have been a lot more immobilized.
I think a lot of what the book was about was trying to come to believe that there was cosmic purpose, because it seemed so cosmically ordained in some ways. In a weird way it was empowering that it was random and sudden and without an immediate way to comprehend it. There was nobody to blame and no blame on a personal level. That enabled me to stay focused on her spirit and on my moving on.
Early on I intellectually understood I needed to accept it, because there was no going back. It happened. Of course it’s very easy to say things intellectually, or to write them, or in your best moments to believe them. More often than not our emotional bodies are so much slower. For me I knew I had to find a way to exist with Rosalie in my memory.
It took me three years to incorporate those five weeks of writing—the lessons and ideas that came out. At the end of finishing the book I do feel like I’ve integrated that experience, so that I no longer live in denial of it.
BLOOM: Over time did your need to find a meaning for the tragedy change? Or did you just stop asking the question?
Tom Hart: If there’s a larger meaning, I can’t comprehend it. I’m not a religious person, but I have an inclination toward the spiritual. Every major religion in its own way says you can’t know God’s reasons. It’s too big for our consciousness. It’s unknowable.
And the sad thing is that it’s mostly injustice down here on the physical plane. At some point everybody has to find the balance between seeing that clearly and moving on anyway. They have to square that with their own drive to stay alive and care for their loved ones.
BLOOM: Time is an important theme in the book.
Tom Hart: Is it? I haven’t read the book in a while.
BLOOM: I guess because before Rosalie died time was moving in the way you expected, and you had a sense of how it would continue as she grew up. You had dreams of her future.
Tom Hart: There was this horrible ending of what seemed like ordinary life. Up till then, time made sense. When this happened, there was no time. Time became different. There was only 'before' or 'after,' and how time was measured seemed different.
BLOOM: There’s a panel where you write 'the hospital – no I don’t like that part.' Were the professionals at the hospital compassionate in the care they gave you?
Tom Hart: There was never any hope, but for the most part everybody was compassionate.
BLOOM: Your depiction of Rosalie brings her to life. She’s such a character—from the way she spoke, to the way she moved, and how she brought what you read together in books or saw in movies into her own life.
Tom Hart: That’s really nice. It was part of my plan, but not the biggest part. I think mostly the book was me trying to get through it. But early on someone said to me that a person never dies, or their spirit never dies, until the people they’ve touched die.
It made me realize I had an opportunity to keep her spirit alive, especially in the way she was so alive for me, so vivacious. So it’s something I wanted to do—not exactly capture her spirit, but have it come through on the page.
And I needed to have that connection with her. It was very strange to draw her alive and happy. It was such a contradiction. Drawing those images was fun and delightful and horrible.
BLOOM: Did you have any hesitation about writing such an honest book?
Tom Hart: I didn’t have any hesitations about it. I’d been making books or stories for so long and I was so utterly broken open for that entire time that it didn’t matter whether or not it was too revealing or I was being too honest.
BLOOM: What do you hope people take away from it?
Tom Hart: I think I joked to another interviewer that I have such a long history of no one reading my work that I don’t have many expectations at all. I needed to do the book for my own sake and it really helped me in my grieving.
I think I needed to integrate the experience so it was no longer something I denied. I intended to do that in the way I’ve most dealt with the world, which is through writing and drawing.
For three years I was forced to focus on that time when my life changed so dramatically and become that new person. I became the person that has this in his past and has this experience in his heart. In general I did the book for my own healing.
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