THE MONSTER

24 November 2015

My pin arrived yesterday.  It's an awareness ribbon for a condition known as Polymicrogyria, or the long version, Bilateral Perisylvian Polymicrogyria.  It's a condition about which, sadly, I have become more familiar over the past almost sixteen years.

When I was brand new to the journaling community -- and when there  really was a journaling "community" not the kind of free for all that there is now -- I began to read the work of other journalers.  We were not called bloggers then and were very proud of our title of "journalers."  I read several journals regularly and one that I followed was by a guy named Rob Rummel-Hudson.  He was acerbic and spoke his mind without edit, but we felt passionate about the same things and I enjoyed reading his stuff.

In 2002, I attended a "Journalcon" in San Francisco.  Rob was there and we attended the same sessions, were in the same hospitality room, but for me it was like having a famous movie star in the room.  I was too shy to even say hello.

When I first started reading Rob, probably in about 2000, he and his wife Julie (who has since been absent from journal entries, at her request, because of her privacy) were expecting a baby and Rob's frequent posts were about his concern about whether or not he had the attributes necessary to be a good father.

In due time Schuyler was born, an adorable little girl whom he frequently referred to as "Chubbin," which matched her chubby cheeks.

In the first year or so there was little hint of the cruel monster hiding in her brain.  But as she got older, they worried that she wasn't speaking.  After several doctors could not find the problem, a bunch of Rob's readers donated money so she could be assessed by one of the top guys at Yale.  The sad diagnosis was Polymicrogyria, a rare neurological condition that left her unable to speak.  I can't find it now, but he once posted a picture of a normal brain and Schuyler's brain, which looks like a hard boiled egg which has been dropped and is cracked everywhere.  They called the condition her "Monster" and Rob changed his blog name to "Fighting Monsters with Rubber Swords." He wrote a wonderful book about it called "Schuyler's Monster."

The initial prognosis was dire.  Rob explains...

Polymicrogyria, in its many forms, affects the lives of its victims in various ways, and all of them are bad things. The difficulties with swallowing that consign some PMG kids to a lifetime of liquified foods and bouts with choking and life-threatening pneumonia are bad things. The lack of speech that robs PMG patients of significant early communication and stunts their development both intellectually and socially for the rest of their lives, that is a bad thing. The accompanying cerebral palsy that many patients experience, the difficulty in walking, that is a bad thing. The cognitive issues that can range from a developmental delay to severe mental retardation, those issues are very bad things indeed, no matter how you spin them.

But a lot of the terrible things they expected to happen, didn't.  Schuyler appeared to be a higher functioning Polymicrogyria child.  As she got older, they learned about assisted speech and again a bunch of journal readers donated to help buy her the first "Big Box of Words" which which she could learn to speak so she could be understood by everyone.

She has been a unique child who preferred dinosaurs and monsters to dolls, who loves horror movies, who longs for a BFF but who enjoys having lunch at school with her parents.  And she travels with her father, sometimes, to conferences, where she uses her assisted speech to answer questions.

Schuyler is now almost 16, a lovely young woman who is able to attend high school, play percussion in the school band and live as normally as a child with a "broken brain" can live.

I will probably never meet her, but feels like Schuyler has been an important part of my life ever since before she was born, so when I learned that there were pins available to bring awareness to Polymicrogyria, I had to get one.

Rob now writes a regular column at a site called Support for Special Needs. When I watch the tireless fighter he has been for Schuyler and the important figure he has become in the special needs community, I think back to the days when he wondered if he had the right stuff to be a father.  I think he's learned that though he, Julie and Schuyler were given a bunch of lemons, they have learned how to make lemonade out of them.