This Is What Perfect Looks Like is Heather House’s memoir about raising a baby daughter with Down Syndrome in a household with three kids under two. Though there’s a lot here that will be familiar to any veteran of multiple kids-in-diapers, it’s the ongoing trauma of dealing with Downs that gives the book its pathos. House has to first come to terms with her daughter’s reality, that this is her life and not some mere problem that can be solved, and then find a way back to her previously joyous and loving existence. Her story becomes a journey through both the machine of modern medicine and the grief of lost expectations, and it’s powerful, not because there are easy answers but because there aren’t any answers at all. Instead, there’s life and love and a community of friends and family that lifts itself up amidst the ongoing slog of medical complications, developmental delays, and the sheer challenge of young children fighting for their place in a now overly-full family.
House is a talented writer, and she tells her story in a way that invites us intimately into her family’s lives. This takes genuine courage. My favorite chapter is the one about House’s lost faith, a particularly fraught but very real topic in today’s America. Why does life have to be this hard? Why can’t Fern be the regular, normal, even brilliant baby that her siblings are? There aren’t any answers, of course, and the platitudes of religion bring little solace against a reality that is all too stark. House comes to realize, eventually, that the platitudes themselves are more about placating her friends than making a real difference, and if she gets to the point where she no longer wants prayers, she knows full well that she still needs attentive ears and occasional shoulders to cry on. This difference is profound.
The hardest parts of this book involve House’s guilt. There’s Mommy Guilt and postpartum guilt and the guilt that surrounds House’s efforts to love three very different children equally in a world where they don’t always demand equal amounts of attention. She works her way through it, of course, and I don’t think I’m giving anything away to say that she eventually finds the joy of having a child with Downs right alongside its challenges. As she says herself, “Love is a verb.” It’s an action, and in that action are both choice and agency, commodities in short supply at the start of this story. Downs may be a way of life, but House eventually comes to realize that the manner in which she deals with that life is hers to decide. From the hardest struggles therefore come the greatest triumphs.
|Heather and Fern, from Perfect|
Full disclosure: I’ve known Ms. House since we were in high school way back in 1990, and though we’ve not seen each other in almost three decades, she was one of those friends with whom I was happy to get back in touch. Her life story follows an arch that will be generally familiar to readers of this blog: she graduated college with expectations of greatness, traveled overseas to teach English in Japan and to see as much of the world as she could, and then returned home to try to build a life of domestic bliss in a country that is both wonderful and maddening in equal measures. Perfect therefore unfolds in a way that feels both familiar and terrifying.
It’s no secret that my wife is a few years older than I am, and like Ms. House, we had kids a little later in life. I remember well the discussions of risk factors and the rest and trying to parse odds like 1/252. This is therefore not some story of alien events. House’s anecdotes ring with some immediacy; her struggles actually hurt. I am truly glad that she’s found joy, but I am also sad for her pain. Her struggles have been worthwhile, but by no means were they easy. Where this book succeeds best is in making this truth real for its readers.
This Is What Perfect Looks Like is not an easy read, exactly, but it’s not long, and the storytelling is brutally straightforward and direct. I plowed through it in just three days worth of train-commutes. It is obviously a must-read for parents of young special needs children looking to come to terms with their diagnoses, but beyond that, I would recommend it strongly to parents struggling for perspective. House struggles, that’s true beyond doubt. She also loves. There are some lessons in that, and not just for the Down Syndrome community.