RSRT NYC

Congratulations to Rachel and Jason Rothschild and so many other tri-state area Rett families for spearheading the Rett Syndrome Research Trust NYC event last night.  Despite the last few challenging weeks of hurricanes, snowstorms and power loss in the region, hundreds of people attended.  It was held at a magnificent venue, the Broad Street Ballroom in the heart of Manhattan’s Wall Street district.  Our friend Stefanie Gutierrez, mother of four-year-old Anna who passed away in September from complications due to Rett syndrome, gave a brave and beautiful speech about Anna and the importance of reversing Rett syndrome.  It was a great night and congratulations again to RSRT and all the families and volunteers who organized it.

Vote for the Donut

Kate came with me early this morning to the polling place and was all smiles.  We went to the bakery afterward and she cast her own enthusiastic vote for a honey-glazed donut.  The term limit for that poor donut was about 90 seconds.

Thank You!

As Kate got taller and heavier last year, we realized in slow motion that she was about to graduate out of the standard infant bucket swing at our local park.  It was great while it lasted, but there is no doubt we pushed the swing’s limits.  In the end, if you could manage to lift her into the swing by yourself, the surprise waiting at the end of your swing session was that she was a whole lot tougher to extricate because her legs and braces would get caught in the bucket.  The extent to which strangers will prefer to stare and marvel versus actually offering to lend a hand is a bit of a stunner.

Nevertheless, our favorite town park didn’t have any special needs or handicapped accessible swings, so we moved on and surveyed the dozen or so other parks our town offers and they didn’t have any either.

So we stewed for a couple of weeks.  We estimated there to be more than 50 individual swings in town and Kate wasn’t able to use any of them.  The concept of raging at Town Hall and provoking the local special needs attorney to start a legal light-saber battle with the town seemed cinematically romantic for all of 3 seconds.  Instead, Sarah wrote a great letter to the head of the Town Commission in charge of Our Favorite Oceanside Park.  In a nutshell, they responded in less than a week with this:  “You’re right.  We don’t have any special needs swings in town and we’d like to be pro-active about getting one.  Are there any swings you would recommend?  Oh, and by the way, we just talked to the town Rotary Club and they’ve offered to pay for the swing and the installation.”  Right then, a double rainbow descended the sky and a unicorn walked through it.

Forgive the sarcasm, but in the world of special needs advocacy, no one ever says “yes” off the cuff, trust us.  It’s usually, “No.  Absolutely not.  Well, maybe.  Come get it,” and then you get the opportunity to walk on hot coals.

So a huge THANK YOU to the Branford Rotary Club and our town’s Memorial Park Commission for sparing us the hot coals and, more importantly, for providing Kate and so many other special needs kids (and teenagers) a swing to call their own.  They even placed it strategically under a beautiful tree in the shade.  Thanks again!

Clean and Simple

If, by chance, you have a Facebook account and you’re willing, you can do something good for Rett syndrome research today with your account profile.

The Rett Syndrome Research Trust (RSRT) has been nominated to the Chase Community Giving Campaign which gives out grants to worthy organizations that receive the most votes through Facebook.

We typically don’t like to encourage these kind of voting campaigns, but this one is clean, simple and could mean $250,000 for research.  You can only vote once and it doesn’t require you to come back.  They don’t ask for your email address or require you to set up any kind of account.  You only need to have a Facebook account and the desire to hit the “VOTE” button.

Following the link below will take you to the RSRT voting page.  Sharing the link below with others also counts as an extra vote if friends click through and vote for RSRT.  Thanks again!

http://apps.facebook.com/chasecommunitygiving/charity/view/ein/26-0687439?ref=f42cf56423

 

Summer Wanes

Summer officially hangs on until September 22, 2012. Until then we'll pretend it's not already getting colder.

Growing Up

I Don't Know What You Want Me To Do

Note to self for future flights: if online attempts to acquire seat assignments fail, call the airline ahead of time.

SIGHING GATE AGENT: There’s nothing I can do for you, sir, we’re about to board the plane.

ME: There’s three of us - my wife, myself and my daughter - and my daughter’s only five. She can’t sit by herself.

SIGHING GATE AGENT: We’re already late boarding.

ME: I booked the tickets online four months ago and your reservation system wouldn’t allow me to choose any seats. Three hours ago, when we got to the airport in Charleston for our first flight leg, I tried to get our assigned seats there, but they told me they couldn’t assign us seats for this leg from there. They said we needed to do it here in Charlotte.

SIGHING GATE AGENT: They were right.

ME: Right. Okay. Our flight just got in. We hustled across the airport and we have three separate seats not near each other, which isn’t going to work.

SIGHING GATE AGENT: Well, I don’t know what you want me to do.

ME: My daughter is five. We don’t all need to be together, but she needs to be next to my wife or myself.

SIGHING GATE AGENT: All I have for you is an empty exit row.

ME: Exit row?! Great! My five-year-old can sit in an exit row?

SIGHING GATE AGENT: No.

ME: Wow. Okay. Any other suggestions?

SIGHING GATE AGENT: Well, you’re just going to need to get on the plane and ask a few people to switch around seats when you get in there.

ME: We need to dismantle two metallic plates from our daughter’s wheelchair before we gate-check it and we need to carry her on the plane because she has trouble walking on. That will make it tough to coordinate a new seating plan once we get on with her because our three seats are all over the plane.

SIGHING GATE AGENT: This plane’s going to be late and they’re going to blame me.

ME: Can you offer the exit row seats you just offered me to someone sitting next to any of our three seats?

SIGHING GATE AGENT: That’s going to take time.

ME: It is.

SIGHING GATE AGENT ON INTERCOM: Will the passenger traveling in Seat 6C please come to the podium? Will the passenger traveling in Seat 6C please come to the podium?

PASSENGER: I’m in 6C.

SIGHING GATE AGENT: Would you be willing to switch your seat for an exit row seat for this gentlemen?

PASSENGER: Only if it’s a window.

SIGHING GATE AGENT: It’s a window. Actually, it’s a whole row.

PASSENGER: Great.

ME: Great.

SIGHING GATE AGENT: [Sigh.]