Cupcakes by Edith Meyer for a Schuyler's Monster reading
Some of you have read Robert Rummel-Hudson's excellent blog and writing. Now you can read his memoir, Schuyler's Monster: A Father's Journey With His Wordless Daughter. There's also lots more of him on YouTube, which actually does a fabulous job of introduction Schuyler, Robert, and their family, including the book trailer:
Here's the official St. Martin's blurb:
When his daughter Schuyler was eighteen months old, a simple question by her pediatrician set in motion a slow transformation for Robert Rummel-Hudson, from a sarcastic, befuddled dad to the very last thing any new father or mother ever expects or desires to become: a special needs parent. Armed with nothing more than his love for his tenacious little girl and his determination to defeat her rare and invisible disorder, he fought his own depression, his past family dysfunction and the nagging suspicion that he was not the right person for the job. In doing so, he discovered a sense of purpose and responsibility, and became the father and advocate that Schuyler needed to help fight her monster.
SCHUYLER’S MONSTER is more than the memoir of a parent dealing with a child’s disability. It is the story of the relationship between a unique and ethereal little girl floating through the world without words, and her earthbound father. It is the story of a family struggling to find the answers to a child’s dilemma, but it is also a chronicle of their unique relationships, formed without traditional language against the expectations of a doubting world.
Ultimately, it is the tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.
And here's my review:
In Schuyler's Monster, Robert Rummel-Hudson tells a story of coming to terms with, while constantly battling, what he calls his daughter's "monster," a disease called polymicrogyria which leaves her unable to talk. She can make some sounds, using mostly vowels, and it's not until age 4 that the author and his wife even find out precisely what is wrong with her. In this incredibly heartfelt memoir, Rummel-Hudson recounts their journey from parents to "special needs" parents, navigating school systems in Connecticut and Texas in their quest to get Schuyler the best care and help she can provide.
At times, their story is bleak, but throughout it, Rummel-Hudson's overwhelming love for his daughter, as well as his belief in her, is clear. Even when things seem at their worst, the couple never let their daughter sense their doubts about her being "broken," as Rummel-Hudson writes. Even though he uses this terminology for her and her brain, on a certain level, he seems to know that for whatever mysterious reasons (his battles with faith and a god he doesn't quite believe in are covered in the book), Schuyler has turned out the way she has.
Some of the best moments are focused solely on Schuyler. She is a "rock star" amongst her young classmates, in various schools, looking the part with purple or red hair and pink leopard print, and drawing her peers around her. When she stands up to (and punches) a bully at a mall playground who's just shoved her and teased her for being a "retard," it's hard for even those of us who are as nonviolent as they come to cheer.
Rummel-Hudson, who has been documenting his life, and his daughter's, on his blog for many years, thankfully doesn't bring the blog into play too much in the book, save to show how wide of a support network he's garnered. When Schuyler's school refuses to purchases the $10,000 "Big Box of Words," a communications device that enables her to type on its screen and have her words voiced by the box, his readers pull together with donations to make the purchase. By the end of the book, when Schuyler and family are ensconced in Plano, Texas, land of megachurches and wealth (and decidedly not a typical home for the Rummel-Hudsons), I felt like I knew this little girl who I've never met. Her spirit permeates each page, though Rummel-Hudson is clear that he is telling his story of being a father unable to permanently fix everything that is "wrong" with his daughter. His guilt, anger, and grief are plain, but it's also his and his wife's perseverance, in not accepting the status quo, that have helped Schuyler get to the place she has, using her words in all kinds of fascinating ways.
In some ways, even though Schuyler's Monster is about a very specific, rare disorder, it's also about being a parent. Rummel-Hudson and his wife learn early on that they cannot protect Schuyler from all the negatives of the world, but they also learn that for her, things aren't as bad as they may seem. She has found her own language and way of relating to people, both before and after acquiring her Big Box of Words, that works for her, and watching her develop, in the words of her father, is the real delight of this book. With sly sarcasm and a healthy dose of self-deprecation, but most of all, love, Rummel-Hudson has written a memoir I wouldn't say is sappy at all, but did make me cry, though not until the very end, and those were tears of happiness.
Labels: books you should buy