You guys know how busy I am these days. And as much as I love to read, it took me three nights last week to finish the article about John McCain in New York magazine (perhaps it was the subject matter? I digress..) So when I tell you that I read a book (a real book, not Snuggle Puppy or Clifford's Peekaboo) in 24 hours this weekend, please take a moment to be duly impressed. The book in question was Schuyler's Monster.
I first came across the writing of Robert Rummel-Hudson in Wonder Time magazine, which is a fairly cool parenting magazine that I read every now and then. There was an excerpt of his book, Schuyler's Monster, in the issue, pegged as a story about how parenting can affect marriage. I quickly realized that while this excerpt did talk about issues that Robert and his wife Julie had in their marriage, it wasn't the typical new parents scared shitless issues. It focused on the problems they had after their daughter Schuyler (pronounced Skyler) was diagnosed with an extremely rare neurological disorder, bilateral perisylvian polymicrogyria, which is caused by a malformation of the brain.
Well, you know me. The moment I find out there might be a sad story in my entertainment, especially health related, I put down the magazine or book, turn off the TV, return the movie. I like my entertainment light with a side of frothy. However, there was something very intriguing about his story, and when I found his blog, Fighting Monsters with Rubber Swords, I was instantly hooked on the stories of the punky, adorable Schuyler and her Monster (which is what Robert calls her disorder).
I don't mean to candy coat it. In his blog and his book, Schulyer's Monster, Robert details the horrifying journey that began when his 18-month-old daughter's pediatrician asked him and his wife if Schuyler had begun speaking yet, and ended with the ultimate diagnosis of bilateral perisylvian polymicrogyria, which affects a large portion of Schuyler's brain. Thie malformation primarily presents itself by robbing Schuyler of the ability to speak.
The story will break your heart in about a million different ways. Robert's love for his daughter is palpable - which is what makes her diagnosis that much more painful. It is brutally honest - the aforementioned marriage problems are explored, the deep, dark fears he has for her future are mentioned often, and his conflicting feelings about God are woven throughout, never to be completely resolved.
But there is humor, lots of it, and a wealth of love and devotion for a child who he refers to as a "little rock star." And by the end, you will feel the same way about this engaging little girl. I swear, you'll want her autograph. More than that, you'll want to her hear speak with her Big Box Of Words.
Oh yes, Schuyler finds her voice, just not in the typical way. But she's definitely not a typical girl.
I know I sound ridiculously gushy, but as a parent, this book hit me hard. Because whether your child is diagnosed with something you've never heard of, or has a learning disorder, or is the most popular, straight-A kid in school, you're going to worry yourself sick. This is something I've learned over the past 10 months. Parenthood is great is all kinds of ways, but the primary feeling you have is worry. I felt for Robert and Julie as parents - and I will root for this little family every day, because, in short, they rock. And you'll root for them too.
Go read Schuyler's Monster. NOW.