Ever since I was a young boy
I've played the Skee-Ball
From SoCal out to Boston
I must have played them all
But I ain't seen nothing like her
In any amusement hall
That young, tall, and blond kid
Sure plays a mean Skee-Ball
She's a Skee-Ball wizard
There's got to be a twist
A Skee-Ball wizard
She's got such a supple wrist
When I approached the bank of Skee-Ball machines last night I did so with a high level of confidence. You see, I didn't grow up with an XBox and PS3, but in the age of pinball and Skee-Ball. Now I sung this song by The Who several times while I piled quarters into the pinball machine, but could never master it. However, after several summers killing time at the Balboa Pier Fun Zone in SoCal, Skee-Ball was mine. I would take on everyone from old blue hairs to the unsuspecting 5 year old cashing in on every win. No shame, just victory! So when Emma suggested a side by side challenge at Dave and Busters, I scoffed and responded "Bring it!". I spoke too soon.
She approached the machine like a pro, swiping the prepaid card with ease and looking at me as to say "sorry old man". Within seconds those wooden balls were speeding up the ramp and dropping into the 40 and 50 point spots like they were being pulled in. I crashed under the pressure, barely able to land the 10 point gimmies as I saw my youth and my crown slip away. Maybe it was the music, maybe it was the lighting, or maybe just maybe she's a Skee-Ball Wizard.
As I walked away in shame, I started to think about expectations and the unexpected.
Last night Genzyme invited us and a couple other Pompe families to Dave and Busters in Philly for a meet and greet. Before we headed into the game room, we sat around the table and talked about life, Pompe, and medical advancements. We learned about promising new therapies, Genzyme's commitment to its patients, and more about the people who will be supporting us for years to come. We learned about other families facing challenges and how they are or are not handling the news well. Then we spoke about expectations.
We spoke about what we should expect Myozyme to do (treatment, not cure), what we could expect for the girls (every case is unique), and then we were asked why our family seems to be managing this so well. I explained that it is based in optimism plus we've researched hard so know where to set our expectations. I also explained that we now expect the unexpected.
When we made that first visit to CHOP searching for a diagnosis we expected a cold hospital environment, but instead we found an inspiring place full of hope. When we began to reach out to others with Pompe we expected to find only stories of struggle, but instead discovered a community of patients and parents who remain an inspiration. And, when we heard about Genzyme we expected to find a typical drug company focused only on profits, but instead we found a team of people, lead by our new guardian angel Dave, who are there to support our whole family.
Does this make us special? Far from it. We've watched others take on long term job losses, children with leukemia, and loss of their parents with grace, dignity, and hope for the future so we've decided to follow the same path. Its the path that allows us to post Good Day Sunshine instead of Blue Monday and the best way to show our girls that while life has dealt them a challenging hand, it is still one with which they can play and win.
So keep an eye open for the unexpected as what you want in life may not always be what you need. If you have any comments, let us know. In the meantime, I'm headed down to the arcade to work on my Skee-Ball game and ask...
How do you think she does it?
I don't know
What makes her so good?
All the best,
Credit to: The Who, "Pinball Wizard"