Monday, June 13, 2016

Making Moments Count At The Grace Cup

A simple question, but the more I think about what the Channel 20 reporter asked me on Saturday at the Grace Cup, the more complicated the answer gets.
These are the awesome kids who played in this year's Grace Cup.

The short answer is I like soccer and the kids in our area didn't really have a soccer all-star game to call their own, like basketball, baseball and football do.
When I came up with the idea, it was equal parts to raise awareness for the sport and its players in our area and to raise awareness for INAD (infantile neuroaxonal dystrophy).
Grace loved hanging out with family during the Grace Cup. And she got her own pink shirt!
Ever since my four-year-old daughter Grace was diagnosed with INAD in 2014, my beautiful wife Mary and I have been working to bring awareness and research monies to this genetic monster that may one day take our little girl.
This is where the answer gets complicated. I don't have an athletic bone in my body, but for some reason I was certain that Grace was going to be starting for the United States Women's National Team at the 2031 World Cup.
Our buddy, James Ryan, captured all the action of the game for us.
Grace and I used to watch Premier League soccer together while mommy caught up on some much needed sleep on Saturday mornings. We listened to the Men in Blazers podcast during bath time. And we played soccer, with me chasing my little towheaded future Megan Rapinoe around the living room as she dribbled a soccer ball while clutching on to the ottoman in the center of the room.
It was fun to see so much family at the game!
At that point, about a year and a half or so, Grace couldn't walk independently, but we weren't that worried. It took me a while to walk, too. Sometimes I still struggle with it.
Action photos from the game!
She was young and undoubtably would take off on her own at any time. But she didn't. And now we know why.
Grace can't walk now, even with the help of the ottoman. In fact, her legs won't support her at all and the 2031 World Cup dream has been replaced by hopes for a cure or a treatment or any kind of miracle.
Kyle and Grace got interviewed for the Channel 20 news!
For me, the Grace Cup is kind of a way for Grace to vicariously play the game that connects she and I.
When the 27 players from 12 different central Illinois schools took the field on Saturday, it was like she was out there too.
More action photos!
It was a great day for soccer!
In reality, she doesn't care. She was way too busy being loved on by various members of my family than to be bothered with watching the game, but it still feels important to me.
It's also a way for me to get across the point of this whole "Grace Filled Journey" to a group that is nearly impossible to reach sometimes... teenage boys.
Smiles for Aunt Mikaela!
Grace enjoyed some time with her cousins too.
At 17 or 18, most teenagers feel invincible, like they have their whole lives ahead of them and nothing can change that.
I know different. I know that Grace may never see her teenage years and how precious every second of every day is.
Ultimately, I hope everyone had fun at this year's game, but more importantly I hope that they take an example from Grace and make every moment count.
Kyle thanked all the players for coming and reminded them to make every moment count.
That's why we'll do this again next year, despite me being a giant ball of stress in the lead up of the first two Grace Cups (thank you to Mary and Travis  for nursing me through it).

Fortunately, I learned the same lesson that I'm trying to convey to the kids: that life is too short to not do things.

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