Monday, July 14, 2008

A Great One

There were people lining both sides of the walkway, just standing, immersed in their own conversations. It was a maze to snake through, with only space enough for on average-sized person to fit through although she’d need to turn sideways and shuffle every few feet.

“Excuse us,” my voice wasn’t nearly as commanding as it needed to be, and my words, even to myself, sounded like a suggestion.

“Excuse us,” I tried again with more volume and authority.

The blockade remained strong.

“Aw just run ‘em over Heather!” Brian would exclaim, smiling mischievously all the while.

So, with Brian’s blessing to use him as a battering ram, we’d begin to forge our way through, clipping heels and the occasional buttock, leaving startled spectators in our wake.

It was always Brian and I who led the way. Brian because he was the more outspoken between his sister and he. In a way, the pairings were reversed from what they should have been.

My friend Amy was much more willing to bellow at people to move it than I, and Jessica, her partner, was more soft-spoken.

But for reasons I don’t recall, or maybe they were never expressed, it was always Brian and Heather, followed by Jessica and Amy.

Most often our outings included a hockey game where we’d try to navigate the people, oblivious to their insensitivity, blocking the aisles until only one smallish person could slide through the space.

Neither Brian nor Jessica was a large teen. At nearly 17, Jessica’s ankles were, at best, the size of my wrists. Brian, the younger sibling of the pair, seemed to me much younger than the 4 years that separated us.

Both Brian and Jessica loved a good hockey game despite the difficulty the venue presented for two young adults pushing two teens confined to wheel chairs. Brian and Jessica both had ataxia telangiectasia, a degenerative disease that mimics several other diseases all rolled into one. It is a disease that robbed the two of muscle tone and mobility rather than intelligence and spirit.

My friend Amy was a home-health aide at the time that we went on these excursions with Brian and Jessica. They were two of her clients, but also friends. She was not on the clock on these outings (and neither was I).
Amy and I attended the first fund-raiser for ataxia in Rochester that Brian and Jessica’s family organized. That first year it was simply a golf-tournament followed by a banquet. Over the years it has evolved into a celebrity-attended annual silent auction and golf tournament, headed by NHL player Shjon Podein’s charity Team 25, which Podein started along with his wife after meeting Brian and Jessica Christensen.

The life expectancy of children with ataxia is not high (most do not reach their 20s), and sadly, Jessica lost her battle at 18.

Brian grew to be a man who brought his sunny smile and spirit to many. He grew awareness of his disease and through his efforts met celebrities who continue to raise funds for research because they were so struck by Brian’s dynamic personality.

Brian beat the odds and lived to be 30 years old. He died May 22, 2008, the same day that my youngest child was born.

5 comments:

Chels said...

Wow Heather this is a amazing post, I never knew that you knew the people who helped start up the fundraiser. My mom and Dad went to the Team 25 thing a couple years ago it was pretty awesome that stars such as Brad Paisley, his wife, and Nicole Sullivan help support such an awesome group of people.

amanda said...

Oh, Heather. What a post. So powerful, thank you!

Jeff said...

Nicely written Heather. These kinds of relationships are the most rewarding AND painful at the same time. Thanks for sharing this story.

chelle said...

I am so sorry for your loss.

Hip Mom's Guide said...

Heather, I second all of these sentiments. This is a poignant post, powerful and sad. I'm sorry, too.