Schuyler’s Monster: A Father’s Journey With His Wordless Daughter.
Robert Rummel-Hudson’s blog: Fighting Monsters with Rubber Swords.
Yes, this book is about a little girl named Schuyler (pronounced Skylar) with a brain malformation called bilateral perisylvian polymicrogyria. This condition, probably congenital in Schuyler’s case, can cause several problems, but Schuyler’s main, most obvious problem is an inability to speak. The author, Schuyler’s dad, tries to focus on both Schuyler’s communication issues and her underlying vibrant personality. She comes across as a friendly, strong-willed, and somewhat mysterious little girl with a profound speech disablity.
However, the book is as much about the author himself as it is about Schuyler. Robert Rummel-Hudson is a self-described smart-ass and an agnostic. He’s funny and snarky, but his agnosticism is the theme that ties this autobiographical tale of a father together. He’s agnostic in regard to God and also in relation to a good prognosis and future for Schuyler. He doesn’t “have much use for Christianity” before Schuyler is born or diagnosed, but after he learns what her disability is called and what difficulties and suffering it involves, Mr. Rummel-Hudson becomes enraged with a God that he doesn’t really believe exists in the first place. If there were a God, he would be “God, my enemy, the bully who’d reached down and damaged my angel’s mind.” Schuyler’s dad can’t be an atheist because he sees that atheism requires as much faith as deism. However, since he has no faith, which he equates with certainty, he can’t believe in God or not believe. Nor does he believe that there is any purpose or meaning to Schuyler’s suffering. He is left with a vague Hope, a hope that, despite evidence to the contrary, he and his wife will be able to find someone or something that will help Schuyler to live a happy life, a fulfilling life. (Happiness and independence and fulfillment are the highest goods in Mr. Rummel-Hudson’s pantheon.)
YesI haven’t lived through anything nearly as tragic and difficult as Mr. Rummel-Hudson’s life with his daughter, Schuyler, so I can’t criticize his anger and hostility toward God, nor his later resignation to the idea that some kind of impotent God may exist and be unable to do anything to help Schuyler. I might very well feel the same way were I in his shoes. However, it’s interesting that I was also reading the first few chapters of Joni Eareckson’s book Heaven: Your Real Home today. In the book, Joni talks about her disability (paralysis) as both a curse and a blessing. She longs for heaven where she is assured of having a new body that will enable her to do all the things she can’t do here on earth. In that sense, she longs to escape her broken body that has brought her so much pain and suffering and denial of pleasure for so many years. However, she also says that her disability is, in a strange way, a blessing: “Somewhere in my broken, paralyzed body is the seed of what I shall become. The paralysis makes what I am to become all the more grand when you contrast atrophied, useless legs against splendorous resurrected legs. . . Whatever my little acorn shape becomes, in all its power and honor, I’m ready for it.”
Now, I’m not Joni either, and I’m not paralyzed or seriously disabled in any way. But I can see that we’re all broken in lots of ways, mentally, physically, and most of all spiritually, and that before we can “get fixed” we have to believe that there’s a Fixer and that He cares enough and is powerful enough to fix us, if not in this life, then someday in Heaven. And if Joni’s disability and suffering help her to know and trust the Fixer, then she’d say it’s worth it. That attitude isn’t much help to the agnostics of this world who, despite their need, are unwilling (not consciously needy enough?) to jump into the arms of the Only One who can meet that need. But Schuyler herself may grow up to see God and her need for Him in a way that her father can only hope to understand.
I pray that she does. And that her father, Mr. Rummel-Hudson, somehow comes to rely on God instead of a rubber sword.