Wednesday, March 9, 2011

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.

5 comments:

  1. Wow, I love that you put so much emotion into this review! I used to be an Asst. Teacher for Sp. Ed. I worked with severely handicapped children, I loved it!! Finally after 15 yrs. I had to give it up, it was not fun anymore, I was burned out. I know that as parents you can not simply give it up for another job, I commend you!
    I don't know if I would like this book or not, but I will add it to my list to explore.
    Thanks for the great review!

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  2. Rob posted your link in his facebook profile. I've been a long time reader of his blog, and also read the book. I would like to point out the subtitle of the book is "A Father's Journey..." so it is his autobiography, on top of or dove tailed to Schuyler's story. The two are intertwined in ways that cannot be undone.

    Thank you for this review, well stated. And I'm glad Rob linked to you -- I am interested in learning more about your experiences with Winter and in Alaska. Nice to meet you.

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  3. Christine, as I put more thought into my reading of Rob's prose, I realized that he absolutely needed to write the book as he did. In the beginning, I had a kind of "Yeah, yeah, yeah, I know all that stuff-let's get to Schuyler" feeling, because as my Winter's mother I had been there. However, I know that (fortunately) only a very small segment of the reading public would feel as I did. I have his book tagged as both autobiography and biography; as you said, the two are intertwined.

    I am grateful for Rob's blog, as it will allow me to follow their continuing journey with their strong and beautiful daughter.

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  4. Excellent, thoughtful, and well written review.

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  5. I wanted to post the link to Rob's blog:

    http://www.schuylersmonsterblog.com/

    I was saddened to see that Schuyler has begun to have the early signs of absence seizures, a specter which has been stalking their lives for many years, as it is almost a given in children with Schuyler's diagnosis.

    Rob's blog, like his book, is honest and pulls no punches. By the end of the book I cared so much for all of them that a million "How are they doing now?" questions plagued me. I stayed up way to late last night reading his blog and answering my questions.

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