It's been more than 13 years since my wife and I discovered that we were going to have a baby. (Full disclosure: She did most of the baby-having work.) We were happy, unbelievably so. At the same time, I felt the same fears that many new fathers face when confronted with their impending responsibility for keeping a tiny human alive and not letting it turn into a serial killer or a stripper: Would this child be healthy? Would she be mostly happy? Would she have the good fortune to look like her mother and not me?
Could I keep her safe?
Thirteen years later, I still worry about those things. (With one possible exception; my daughter Schuyler lucked out and is a near clone of her mother. Crisis averted.) But when Schuyler was 3 years old, after about two years of tests and evaluations to determine why she wasn't speaking, we sat in a doctor's office at Yale University and learned what it was that we truly had to fear. It was the specter that would hang over our daughter, the monster that would never release her from its grasp, but it was also the force that in ways both predictably challenging and, ever so occasionally, surprisingly positive would help to shape the weird and wonderful person she would grow into.
In the summer of 2003, Schuyler was diagnosed with a rare brain malformation called bilateral perisylvian polymicrogyria. We were told to expect many things from her future. Seizures, possibly deadly. Developmental disabilities, possibly significant. Problems with chewing and swallowing, perhaps requiring an extremely restricted diet.
And she might very well never speak.
In the words of the old cliché, that really was the first day of the rest of our lives. And yet, in the intervening decade, we as a family have worked hard to find our way, to negotiate with Schuyler's monster. In many ways, she has beaten the odds. Her dietary exclusions are very slight, her developmental disability hasn't kept her from attending school in an environment of significant inclusion, and her seizures have been intermittent and manageable.
The one area that has presented the most challenges has been in communication. Schuyler's speech is extremely difficult to understand, requiring the use of electronics and software and a great deal of patience. And in our quest to connect with Schuyler, to hear the things she so desperately wants to share with us, we have developed a relationship of astonishing richness. After all these years, and after so many mistakes and stumbles and frustrations and failures on my part, I think I am beginning to understand.
In my 2008 memoir, I described the world that special needs parents experience like this:
We'd learned to be on our own, navigating a new world of Schuyler's disability, and with little information and no road map. We learned that for parents like us in the situation we were in, all you can do sometimes is trust in your fool's hope and keep going. You never give up, and you persevere, not because you're plucky or heroic or even smart, but rather because you hate the thought that there might have been some answer or solution waiting right around the next corner, and you would miss it if you gave up too early. It's hope, and it's stubborn and sometimes it's even stupid, but it's the thing you've got so you run with it. You go into battle against the monster with a rubber sword because, really, what else are you going to do?
I'm grateful to Parenting for giving me the opportunity to share this experience with you, and I hope you'll pick up a rubber sword of your own and join me.
Robert Rummel-Hudson writes the blog Fighting Monsters With Rubber Swords and is the author of the book Schuyler’s Monster: A Father’s Journey with His Wordless Daughter