Schuyler's Monster by Robert Rummel-Hudson (✰✰✰✰✰)
Schuyler's Monster is not some phantom conjured by a child and reported to live in her closet. Her Monster is real, a genetic abhoration, residing in the very structure of her brain tissue, invisible to all save the MRI machine. The monster is invisible; Schuyler is silent.
I was very excited to read this book, as I too have a wordless daughter. In the beginning I was disappointed because it felt like it was Robert's autobiography and not Schuyler's story, and to some extent that feeling carried through for the first half of the book. As I pondered the book after finishing it a couple of thoughts combined to bring this book up from a three star rating to a five. First, I thought a lot about my impatience with the author telling his story. As the parent of a severely handicapped child, I wasn't interested in the father's frustrations and emotional roller coaster. If I am completely honest, I felt just a bit of exasperation with him for not focusing on all the things that his daughter could do. As opposed to, say, my daughter.
However, as I mulled things over, several things became clear to me. The average reader does not have a daughter like his Schuyler or my Winter, and would, therefore, have no idea that a train wreck in slow motion is a pretty good metaphor for how your life, as the parent, can feel as you try to keep your child on the track. And the more I read about Robert the more I realized how eloquently he managed to express, without ever losing his sense of humor or poignancy, how one survives this kind of a life altering challenge. I identified so completely with his struggle, and that proves what a beautiful job he did in conveying the reality of our lives to someone who doesn't live it every day.
While my daughter has more medical problems and requires much more physical care than Schuyler, Robert's set of challenges are no less draining; they are just different. I have always been profoundly grateful that my daughter is too "broken" (to use Robert's word) to realize how badly she is being cheated out of a full life experience. Schuyler is a very bright little lady who simply can not speak and has some other slight physical delays. She knows just how different she is, and her parents carry that added pain of being unable to hide that knowledge from her. Robert's battle for acceptable schooling and assistive technology for his daughter is awe inspiring. Beyond a certain point, it became readily apparent that my Winter had reached the summit of her potential and that no amount of medical and therapeutic intervention would ever let her sit, stand, communicate, or a whole plethora of other things. Robert and Julie knew how intelligent their daughter was and knew how much potential she had if they could only find the tools needed to open the floodgates. They have never had the luxury of feeling that they have fought the fight and the battle is won. For them it will be ongoing for as long as Schuyler lives.
By the end of the book, I loved Schuyler. Not in some namby-pamby, gosh what a great little kid kind of way, either. I loved her in an emotionally bonded, heart breaking fashion that surprised me. And I knew in that moment of realization that Robert Rummel-Hudson had crafted a mesmerizing tribute.