"I CAN'T!" Notes on resistance in life and writing...

Resisting the paparazzi. July 4, 2014

My darling daughter, Stella, is twelve and a half now, prone to the vagaries of tween moods and whims, with a little extra spice from the "typical" stubbornness commonly exhibited by people (especially adolescents) with Down syndrome. When she is asked to do something and doesn't want to, which happens with alarming frequency, she has taken to protesting, "I CAN'T!" in a voice harsh with impatience.

I know how Stella feels. There are so many things I "should" do--or even "want" to do--that provoke serious resistance in me. Whether it's exercise, or eating right, or the proverbial cleaning my room, I feel like I'm twelve and a half and find myself having to be my own parent--or, worse, just giving in to the "can'ts" and not doing anything.

Writing, unfortunately, is one of these things. Although I identify as a "writer" and a "teacher of writing," and there is nothing like the feeling of being lost in language and in the flow of creation, I admit that I do not always see putting words on the page as a fun and exciting activity.

buddy walk...stella style!

The NYC Buddy Walk starts at the top of the "Great Hill" in Central Park, then winds down the path and out to Central Park West and back up to enter the park at 106th Street. We (that is, Stella, Bobby, our friends Adrian and George, and I) got off on the right foot, perhaps a little behind the curve, with perhaps a few more stops than the rest of the walkers, but then we took a sharp left at the practically brand-new, very cool Tarr Family Playground.

A giant sandbox. A water play area. Some really cool jungle-gym type things. It was no contest. This was where we ended up spending the rest of the "Walk."

There is a certain point at which you just give in and let the moment happen, despite the "plan." We have many such moments with our Stella Bella. This photo was snapped after her strip-down sojourn under the water sprayers (blessings to the anonymous woman who offered a beach towel). She was clearly in her element. And the whole thing really was all about her, anyway.

I sat on a bench and chilled. I chatted with George and cleared up a funny miscommunication (I'd been raving about the new Howl movie, and he thought I meant the "owl movie," Legend of the Guardians). When Stella moved out of sight range, George got up and followed her for a bit (he had also chased her earlier when she started running, and carried her piggyback when she refused to walk).

Then it was time to go, so we headed to our car (which George had parked for me after I spent a fruitless 45 minutes circling a 10-block radius for a space) and back to Queens. I felt a little weird about not participating in the events on the Great Hill--Bobby and Adrian did not even get their snow cones--but we had done the walk. And unlike last year, we had T-shirts. It was a beautiful day. Somehow, thanks to a little--or a lot of--help from our friends, and a few deep breaths, it had worked out for the best.

stella's stars...buddy walking in central park today!

our wonderful team logo by the stellar George Giunta!

We're walking in Central Park today to support the National Down Syndrome Society Buddy Walk! Despite our terrible loss, the memorial on Monday, and all the other stuff that's been going on (including a sprained ankle Monday night), I was determined to walk this year, and we've put together a little team for the event. It's a beautiful day, and I have a pair of high-top sneakers to get me around the trail. You can click here to contribute to our team. You can enter my name (Amy Lemmon Bowen) Bobby's (Robert Bowen) or Stella's (Stella Bowen) to go to our personal pages.

world down syndrome day

It's World Down Syndrome Day again, 3/21 (get it? Trisomy 21). The National Down Syndrome Society has released a national policy update for the occasion. I particularly applaud the point, "Provide a first-class education for children with Down syndrome." We're not exactly thrilled with the education Stella has been getting in the NYC public school's District 75 program. I'll write more about this later--Bob went to the IEP meeting a couple weeks ago and we have some updates--but for now let's just say there could be more pro-activity going on.

Here's a fairly recent pic of Stella Bella, with her new glasses (which have already been lost and found several times and which she is not currently wearing a whole lot). Today is so warm there is no need for the coat and the stylish beret--we're going to head out into the sunshine soon!

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