By Susan Saraf

By Susan Saraf

Saturday, October 29, 2011

The Rett Set

"Big Fat Penis!" I call, "What's up?"

I call into the living room of the apartment we share on 77th Street in New York City. The apartment, Rachel, or Big Fat Penis, as I call her, secured for us.

I was a senior at NYU, she was a first year grad student at Columbia, she was earning her Master's in Social Work.  We had met three years earlier at the University of Rhode Island before I transferred.  We became roommates. She always did everything right, for everybody. I'm not really sure as nicknames go why she ended up with Big Fat Penis, but she took it in stride, then called me the same thing. It became our greeting and then our way of communicating our feelings.

"Hey how's your Peen?" I'd ask.
"Pretty plump. Yours?" she'd say.
"Feeling limpish," I might confess.
"Oh, no, what's wrong with your Peen?" She'd ask.
"Test today."
"Oh." She'd understand, pausing to look at me.
"It's okay it'll be plump soon, I studied up." I might say, on the bright side.
"Totally, keep it plumpy." She'd say, before I headed out. "Later Peen."
"Later, Big Fat Penis."

We've been in the periphery of each other's lives since 1996. Keeping in touch over beginnings, middles and endings like weddings, births, holidays and funerals. We always call each other Peen.

We have babies close in age, my middle, her last, born within days of each other. When I heard about her first born daughter Zoe, coming down with Retts syndrome, I researched what it was. I write, "coming down with" because for the beginning of Zoe's life she was thriving, like any healthy baby and then, as I learned happens with Retts, she started declining. It's one of lifes cruelest tricks.  Rett's is a genetc disorder almost exclusively in girls where the baby is growing and learning like any other and then at, before or around two years old starts to lose everything she learned, like saying her baby brothers name or holding her sippy cup.  Her life expectancy is not long.  Even if you don't have kids it's not difficult to imagine how devastating the situation is, although we will never know the hell of Peen's day to day frustration and agony, every day a new kind of test, the kind she can't study for. She has a bright outlook, appreciates the little moments.  She still says, when I ask, some day's are plumper than others.

So when she sent out this letter about her fundraiser November 9, 2011 (pasted below), I thought what little could I do? I could raise a little bit of awareness for Peen and her family, maybe raise some funding for Rett research that there may be a cure to reverse the syndrome in Zoe's lifetime, which is miraculously looking more and more possible. Please read it and pass it on, feel free to repost my blog. Let's help Reverse Rett. The Rett set, the coolest kids around. Thanks.



Please leave a comment here. I am trying to build a community! Thanks!

No comments: