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?”
“Do you think you will go outside with Daddy?”
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.