Thursday, May 10, 2018

The Hunt To Beat INAD

Wilson Mizner once said, “Be nice to people on your way up because you’ll meet them on your way down.”

While I don’t necessarily consider myself up or down, I understand the significance of Mizner’s words more than ever since we started our journey with Grace and our fight against infantile neuroaxonal dystrophy.

We had an AWESOME day with the softball team from Purdue Northwest!
My beautiful wife Mary and I have witnessed time and time again the generosity of those whose lives we’ve touched in one way or another. They’ve held fundraisers. They’ve sent cards. They’ve just been there for us.

Grace got a new helmet at softball, both signed by all the players!

Part of that is due to Grace, who still has the ability to light up a room even though her fight against INAD has taken its toll on some of her abilities. The sparkle in her eyes and joy in her smile is still there though, even if her body won’t always let her show it in other ways.

It was a nice weekend getaway for our family!

I believe that the other reason people have embraced our Grace-Filled Journey is because of the way Mary and I have shared our story. By making the community part of our journey, people seem to feel compelled to share with us. Our pain is their pain, but our joys are also their joys.

Coach Stansell helped Grace and Charley throw out the first pitch!

The fundraisers are nice (name another community that could raise more than $150,000 for a rare disease like INAD and still have time and money for dozens of other worthy causes), but the awareness is huge for us. By continuing to share Grace’s story with people who may never have heard of INAD beforehand, we extend Grace’s legacy of hope and message that none of us are guaranteed a tomorrow, so make the most of today.

We had one such opportunity this weekend, at the Purdue Northwest University softball game in Hammond, IN. Our connection with Purdue Northwest is like most connections in the world, it’s not what you know, but who.

I had the opportunity to get to know Marty and Kara Steffens of Litchfield while covering their son Mason and daughter Tessa when they played for the Purple Panthers from 2009 to 2015. We found out about Grace’s condition around the same time Tessa was finishing up her prep basketball career and Marty has been a big supporter of my family since we shared the news.

Tessa would go on to sign to play softball for Purdue Calumet (Purdue Northwest’s predecessor) and it’s been awesome following her success at the next level. Her team also gave Grace a signed helmet during Tessa’s freshman season, officially making them part of Team Grace.

While we’ve followed them from afar, Hammond is a little bit of a trip from Hillsboro and we hadn’t the opportunity to see them in person until this past weekend. Marty, who spearheaded the awareness idea Tessa’s freshman year, spoke with the Pride’s new coach Niki Stansell about raising some more awareness for Grace and INAD.

The team getting ready for the game!

Coach Stansell was all for it, even though we’d never met her. Last fall, we set a date in April, with the hopes that it would be warmer than when the Pride start their season in February.
The plan was to have Grace throw out a first pitch, or at least assist in it, while the team would sport INAD awareness T-shirts during their warm-up. We opted for the phrase “Hunt To Beat INAD” which incorporated both our goal and the Pride’s hunting rallying cries associated with their lion mascot. Creative Flair made the shirts, which were gold with purple lettering, and we were good to go for the game.

The whole trip was a much needed break for our whole family. We headed north after Grace’s physical therapy appointment in Springfield on Friday and while it was a long time in the car, it was great to be together.

After dinner, Mary took our one-year-old, Charlotte, swimming. Charlotte, aka Charley Danger, has provided us with a new parenting experience, hitting milestones that INAD stole from Grace. It’s been an adventure, but a great one.

When we got to the softball field on Saturday, we were greeted by the Steffens family and the girls were all smiles to see them (alright, Charley glared at Tessa at first, but warmed up later). It was pretty impressive to see the whole team warming up on the field in their Grace shirts.
We got the chance to meet Coach Stansell and some others from the university, all of whom treated us like we were the most important people in the world that day.

Charley and Marty Steffens had a hug for Coach Stansell.

After the player introductions and national anthem, we made our way to the field for the first pitch. We decided to let Charley help Grace with the throw, or that was the plan. Like always, Charley had other ideas. Finally, with some cajoling from Coach Stansell and Tessa, she would let go of the ball for long enough to qualify as a first pitch. It wasn’t a strike, but it was perfect (a video is on the Grace-Filled Journey Facebook page).

After a quick picture with Grace and the Pride, it was time to play ball. The goal of finding a game where it wasn’t freezing worked, but just barely as it was still pretty chilly, the norm in Northern Indiana apparently.

Mary fed both Charley and Grace, with me taking over Charley corralling duties. She has nearly mastered walking, which means that sitting and watching a softball game wasn’t high on her priority list. Thankfully, there was a lot of room to roam where I could still keep an eye on the game as well.
Unfortunately, the Pride lost, with Tiffin University tossing a two-hitter. The girls were getting pretty tired by the end of that game and we opted to head home before the start of the second game of the doubleheader.

We said our goodbyes to the team, got some hugs and hit the road back to Montgomery County with the promise of coming back next year.

More than anything, these trips reenergize Mary and I. To see people who are inspired by Grace’s story never gets old and makes us want to fight even harder for our little girl.

Life on the journey to beat INAD is rarely fun, if ever, but the people that we’ve met along the way make us know that we wouldn’t trade it for the world.

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