Being Part Of Team Grace

As I was scrolling through my Facebook news feed tonight, I read a post that the Litchfield High School football team raised $250 for a player on the opposing team who is currently battling cancer. I couldn't help but smile as I read through some of the comments, and discovering the money was raised in memory of one of our favorite superheroes, Faith Hartzell.

It hasn't been the best season for the Litchfield football team, as one of their best chances to win this season got away from them tonight. But, regardless of the score, their efforts off the field to help an opposing player truly make them winners in my book.

The top eight volleyball teams with Gracie Lou

It got me thinking about a lot of things. Just this past week, we attended the final check presentation volleyball game from this year's inaugural Montgomery County Invitational volleyball tournament, affectionately dubbed "A Grace-Filled Tourney." Hosted at Hillsboro and Lincolnwood high schools, all four of our county high schools raised over $7,500 for INAD research in honor of our Grace.

Grace and Charley at a Friday night game

I'm sure when each of the 16 teams signed up for the tournament, each hoped they would be the one to take home the trophy. After all, it did have a darling Princess Grace logo on it!  But at the end of the two-day tournament, only one team got to take home the trophy. And only one player on that team got to be named the most valuable player. More than 100 volleyball players competed in the tournament, but still only one gets to be "the best." 

Grace and one of her best preschool buddies, Lauren

Does that mean the other players don't get to win? I don't see it that way. When we showed up at the tournament on Friday night to see some of the county teams play, our family was particularly touched to see players from other towns wearing purple ribbons in their hair or purple socks. None of these players had ever met Grace before. But they still wanted to be part of something that was bigger than the actual game.

Grace's cheering section

Some teams knew they may not finish in the championship bracket, but fought hard to get enough wins to play at Lincolnwood on Friday in the top two brackets, because they knew Grace would be there. But only half the teams made it in the top, and some teams didn't pick up a single win all weekend. I have no doubt those girls played just as hard and with as much heart as the ones who played in the championship game.

The prayer circle before the game

It seems like we all have that inner desire to win and to be the best, and that's a great driving force for all of us to give our best at everything we do. But at the end of the day, not all of us are going to be the one that comes home with the victory, whether it's in a game or a promotion at work. But even when we don't get the win, I hope we'll always still give our best and remember there's something bigger than winning.

Kyle in the "Serving for Grace" fundraiser

Just before the start of the championship game, Grace was presented with a plaque and named an honorary member of the all-tournament team, probably the only time in her life she'll have such an honor. But it certainly warmed my heart. And before the first serve, those top eight teams made a huge circle around the gym and prayed for Grace and those researching INAD to find a cure. A few tears might have fallen down my cheeks, as I stood in awe of the entire gym full of winners, learning to be part of something much bigger than the game.

Kayley and Kensey presented Grace with her all-tournament team plaque

In the end, only one team got to take home Grace's trophy, but I can tell you that all 16 teams will always be a very special part of Team Grace for their efforts off the court. Oftentimes, some of the best stories in sports come from the athletes who learn to give of themselves win or lose. So, remember, it doesn't matter how much playing time you get or how many points you score, what you'll be remembered for is the kindness and compassion you show off the court. And you'll always be a member of Team Grace.

mlh

Making Little Moments Wonderful

It was nearly ten years ago that Kyle and I took our first spin on the dance floor together, swaying to Eric Clapton's famous "Wonderful Tonight," at the Litchfield Sports Boosters first $10,000 dance fundraiser.
Kyle and I had only been dating a few weeks, when our friend Denise talked me into buying tickets for the dinner, which was nearly two months later.  I didn't have any idea if Kyle and I would even still be dating when the dinner rolled around, but Denise was very persuasive, and I bought the tickets anyway.  My friend, Amy, bought tickets too, so we figured if we didn't have dates, we would just go and enjoy ourselves.

But, Kyle and I were still together, and that night was such a fun one.  I got a new dress, and had my hair and make-up done. Kyle showed up at Amy's to pick the two of us up and had a rose for each of us.  Talk about brownie points!
And although neither of us is much into dancing, when the first slow song came on, I took Kyle out to the dance floor, for what has now sort of become our song.
I admit it seems a bit odd, when there are other songs that may tell our story better, like Blake Shelton's "God Gave Me You" (for the ups and downs) or Rascal Flatt's "God Bless the Broken Road." But we've sort of always stuck with "Wonderful Tonight."

I feel wonderful because I see
The love light in your eyes
And the wonder of it all
Is that you just don't realize
how much I love you

As the chorus refrain plays in my head, I stop and think about what the words mean to us. I think it's sometimes easy to be "hopelessly devoted" in the beginning of any relationship. Both partners are on their best behavior, trying to impress the other, and show how much they really do feel for each other.
But as life takes over, some of those simple gestures seem to fall by the wayside, and it's easy to take that other person for granted, just expecting they will always be there. It's easy to lose that "wonderful" sort of feeling.
One of our favorite Christmas gifts each year is a devotional book my mom gets us that we read daily together. There's one that always sticks out in my mind. Someone had gone to their pastor and said he just didn't love his spouse anymore. And the pastor said that love was not a noun, but rather an action verb, and that if he wanted to feel those loving feelings, then he needed to act lovingly to his spouse. It's kind of in line with the Kirk Cameron movie, "Fireproof."
And though that sounds simple enough, I'm here to tell you that marriage is hard, every single day. Add in the stresses of work and raising children, and it's easy to see how one can feel taken for granted.
But in our house, most nights before bed, we take a few moments to write in our "Blessings Book." Each of us has to write at least five things we were grateful for that day. Some days it's harder than others, but we can always find small things, like getting to have lunch together or take a walk as a family. It sort of helps the two of us refocus on what really matters, and finding "wonderful" moments to spend together.
Some days, it's easy to find my way into a pity party, because raising a child with a terminal illness is hard. I find myself angry that our family can't do things many consider "normal." Even just taking both girls to a ball game is a big job, especially trying to work around Grace's eating schedule. Some days, it's almost more than I can bear, wishing for things to be different.
But on those days, it's more important than ever to remember that life can be wonderful. I have to work hard at that every single day, and Kyle and I still fight more than either of us would probably care to admit. And even though life is hard, and that it's easy to take the ones you love the most for granted, really good things happen when we remember that life will always be full of "wonderful" moments. Sometimes you just have to look harder to find them and remember

Oh my darling, you were
wonderful tonight.

Team Grace

The following post was written for this year's programs for the inaugural Montgomery County Invitational, "A Grace-Filled Tourney." It featured 16 teams playing at Hillsboro High School and Lincolnwood High School over two days.  We loved every minute, and are glad to induct some new members onto Team Grace.

When my wife Mary and I were expecting our first child in 2011, I had some of the same dreams that I think most fathers do. I wondered what sport Grace would be interested in once she got older. Would it be tennis like her mom or soccer, her daddy's favorite sport, or volleyball under the tutelage of Aunt Monica, who played at Marquette University. My family is so sports-centric that the thought that she wouldn't be interested in any of the above was fleeting at best.

After Grace was born, my thoughts on my little girl's sporting future continued. Sure I'm as athletic as a water buffalo on ice skates, but Grace would be different. She was born just weeks before David Freese carried our favorite team, the St. Louis Cardinals to their 11th World Series title in improbable fashion. The doctors continued to track her growth in the 80th to 90th percentile in height, taylor made for volleyball or basketball. We watched the United States men's and women's national soccer teams and the English Premier League any chance we could and even chased each other around the ottoman in our living room with a soccer ball once she was able to walk.

The latter memory comes with a caveat, one that would become the biggest part of my life. While Grace cruised on the furniture, getting from Point A to Point B as long as she had a hand on something, she never walked on her own. That was one of the things that set us down our journey to find out why and eventually led us to the crushing news that Grace had a degenerative neurological disorder called Infantile Neuroaxonal Dystrophy, or INAD. If you've never heard of INAD, you're in good company. There are only about 50 known cases worldwide and until a few years ago, there were no studies looking for a cure. The disease is characterized by loss of muscle function and the ability to walk or talk. It also carries a pretty grim prognosis, with most children with INAD not living past the age of ten.

Since we first learned about this rare disease, we have become somewhat "experts" on INAD, genetic testing and pretty much anything else that relates to our daughters health and future. There are now multiple studies that are looking for a cure or a treatment for INAD, including one at Washington University in St. Louis, all of which are funded by the families of children with INAD. We have met with Doctor Paul Kotzbauer, who is in charge of the Washington University study, and we consider ourselves blessed to have him in our corner. We know that someday, he will play a part in curing this horrific disease.

While INAD has robbed Grace of her ability to walk, it has not robbed her of her spirit, which shines through even in the hardest times. Over the last few years, she has provided our family and our community with countless reasons to smile and to find the joy in a world that can sometimes feel like it's collapsing in on itself. In return, our community has embraced our family in a way that is awe inspiring. From bake sales to penny wars to donation raffles to T-shirts, the people of Montgomery County and the surrounding communities have raised more than $130,000 for INAD research, with most of that money going to the study at Washington University. Even beyond the fundraising efforts has been the support that our family has received. We have tried our best to give Grace as many experiences as we can while we still have her, whether that is eight minutes, eight years or eight decades. Our local teams have helped make that a reality through Volley For Grace games, first pitches, honorary medals and even a ceremonial "slam dunk" once.

All of this has helped make my dream a reality. While Grace may not be in between the pipes for the 2035 United States Women's National Team or hammering down a kill for her mommy's 2030 Mizzou Tigers, she has inspired a set of champions, who will not only carry lessons of compassion and humanity on the court, but off it as well. The student athletes that have been with us on this journey are world changers. They are helping us find an answer to INAD, to make sure that no other family has to go through what we have with this terrible disease. They are Team Grace. Now you are too.

KRH