by Kari Wagner-Peck
I stopped reading memoirs about raising a child with Down syndrome awhile back mainly, I think, because they all started seeming the same. Most follow a fairly predictable trajectory: a child is born with Down syndrome, there is much grief, then acceptance, and finally celebration. It’s not that there is anything wrong with this storyline (which, if I’m honest, fits my own storyline with regard to having my own child with Down syndrome), it’s just that after a time, I had read enough of them. So when I saw mention of Not Always Happy – probably on Facebook, I can’t really remember for sure – and that it was funny, my interest was piqued.
Not Always Happy does stand apart. Its subtitle, An Unusual Parenting Journey, is a true description not only in that parenting an atypical kid is bound to be somewhat atypical in itself, but because Wagner-Peck and her husband’s parenting journey has been atypical even in the context of raising a child with Down syndrome. Also, this memoir isn’t the typical grief-acceptance-celebration storyline.
Wagner-Peck and her husband married a little later in life. She was already in her mid-forties. They wanted children – or a child – but decided to forego fertility intervention and set their sights on adoption. They wanted a “typical” child on the young side.
“We felt we had made it quit clear the biggest disability we were capable of coping with was a child who was left-handed or color-blind.”
But when they get a call that a two-year old boy with Down syndrome is available through the state foster system, after an initial, brief hesistation, they decide that this boy is meant to be their son. The more they learn about Thorin, they more they fall head over heels for him.
After a long and somewhat harrowing foster-with-the-hope-of-adopting process, during which it remained unclear if Thorin’s biological mother would relinquish her parental rights, Kari and Ward become Thorin’s adoptive parents. Over the course of the next few years, they deal with Thorin’s health issues, behavior issues, and attachment issues, slowly but surely becoming a cohesive family.
Much of the story revolves around their experiences with schools, teachers and other staff as they attempt to make sure Thorin’s educational needs and rights are met. So many of their experiences mirrored our family’s with respect to our son Finn’s schooling. Reading the pages on which Kari recounts battles, demoralizing IEP meetings, scornful teachers, baldfaced lies by school district staff, and repeatedly coming up against brick walls in trying to get one’s child’s needs and rights met – my blood boiled at my own memories. Eventually, the Wagner-Pecks pull Thorin out of school to homeschool him, which is also what we eventually did with Finn.
In one segment, Wagner-Peck recounts how she worried about how to tell Thorin that he has Down syndrome. As I read this, I felt a twinge of recognition – I knew where this was going. As I kept reading, my heart started pounding and I wondered, “Am I going to see my name written on these pages?” Then she recounts how she sat Thorin down and impulsively told him that he has a superpower called Down syndrome, and how she recounted that conversation in an article for HuffPo, and how some people gave her crap for it. I was one of those people; I remember reading her HuffPo article and responding to it with a blog post, which, if I recall correctly, she commented on. When I bought her book, I didn’t remember her name as the woman who wrote that HuffPo article.
In any case, I really enjoyed her book. Unfailingly honest, written with plenty of humor, heartfelt without being saccharine, I think every parent should read this to understand, if nothing else, some of the hell we parents of atypical kids go through at the hands of institutions that are supposed to serve our children.