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Schuyler, I love you sister

Gentle readers, I have a new heroine. A She-ro, if we are being politically correct. People say she looks like Drew Barrymore, but I think she resembles a young Louise Brooks. She loves dinosaurs and she loves to laugh. Her name is Schuyler Noelle Rummel-Hudson. Let me tell you about her, because she is, in Susan Isaacs’ words, a brave dame.

I found out about Schuyler from her father’s new book, Schuyler’s Monster. Robert and Julie Rummel-Hudson meet, get married and then surprise! A baby is on the way. Getting her name from a random waitress they meet, Schuyler is a cherished and loved baby, but soon they notice that she’s not hitting her milestones, mostly the fact she’s not talking.

Scared and frustrated, they take her to several therapists and doctors. Now this brought back the memories, let me tell you. I’ll also let you know the memories weren’t the misty colored ones. As someone who has something wrong with her wacky gray matter in her brain, I had to go to a lot of therapists and doctors back in my day. I had to draw circles, cut in a straight line, put blocks in order, and a lot of stuff I blocked out. This led to doctors saying I was autistic, schizophrenic, name a ic, I was it.

Finally, after much heartache and frustration, the Rummel-Hudsons find out that Schuyler has bilateral perisylvian polymicrogyria, a atypical neurological disorder in her brain that impairs Schuyler’s ability to talk. They take her to other doctors who tell her that it might be unlikely for her to live on her own, that she will suffer from seizures, and it might be unlikely she would live on her own, go to college, and have what many would consider a normal life.

I know this sounds depressing. I know you might be reading this and thinking “Well thanks, Jennifer, but life is depressing enough. I don’t want to read about this kid.” But you need to. Because Schuyler Rummel-Hudson doesn’t accept what the doctors say about her. She approaches everything with joy and laughter. After another sad meeting with a doctor, the family is in the airport to head back home, they get on a moving walkway. Delighted, Schuyler starts to run down the walkway. Robert gets scared because he’s worried that she’ll fall, she trip, something bad will happen (the doctor told them that she would always be clumsy) Instead of falling or stumbling, she stayed put. She cried out “Ha!” I love this because I feel like Schuyler is saying to the doctors, to the well meaning teachers who don’t understand her; to everyone she is saying you think I can’t do things? Just watch me. I’m going to amaze you no matter what.

Schuyler’s Monster is one of the most honest, sweet, and funny books I read in a long time. As we can read in the papers life can be so hard (the war, the primaries never ending, Rachel Ray getting busted for wearing a paisley scarf) we owe it to ourselves to read Schuyler’s Monster. We have to be in awe of Robert and Julie Rummel-Hudson, who become Schuyler’s fiercest advocates. It reminded me of a line in the Judy Garland movie A Child is Waiting which dealt with special needs children. One of the parents visits another parent and tells him: “The thing is the children don’t see themselves as a tragedy. Then we must realize the tragedy is in ourselves.” Okay, I’m paraphrasing the quote, but hopefully you get the idea. Because Robert Rummel-Hudson has turned what many would consider a tragedy and made it into a garland of hope, love, dinosaurs, and beauty.

And if Mr. and Ms. Rummel-Hudson read this: Many doctors told my parents it was doubtful I would finish high school, much less college. Not only did I finish high school, I graduated from college two years ago. Okay, it took fifteen years, but I did it. If Schuyler can handle it, take her to kid’s yoga for her balance. Keep fighting the good fight. And most of all, thank you for sharing her with us.

For more information about Schuyler, read her father’s blog at: http://www.schuylersmonsterblog.com/