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

Grace's Sixth Birthday

Six years ago, the most beautiful blonde-haired, blue-eyed girl entered our hearts and forever changing our lives.

In a matter of moments, I went from being in labor to having an emergency c-section, to becoming a parent. Like most new parents, we felt a huge range of emotions that first day, from total and absolute love and adoration to complete fear.  We went from being able to decide for ourselves when we wanted to sleep and eat, to having someone, weighing less than ten pounds, dictate our entires lives.

Charley loved her first real food at Pappy's Smokehouse

It was a hard adjustment for me at first.  Although I always loved babysitting when I was growing up, and loved being around children in general, it was completely different having a child totally reliant on me for everything.  I was overwhelmed and just sure I was going to mess everything up.

But eventually, we found a routine that worked for us, and even though that routine was constantly changing, we seemed to find a groove as a family and enjoy being together.

Family photo at the zoo

Mommy and her girls

Birthdays have always been a fun celebration in my family, so as we neared Grace's first birthday, Kyle and I had a lot of fun planning a big Elmo-themed birthday party for our family and friends. We even had a mini party at the nursing home with my Grandpa Phil, who shared Grace's birthday. Even though they only got to celebrate that one birthday together, I know it was one of his favorites.

Shortly after Grace's first birthday is when she began to miss milestones. In the beginning, it was easy to think Grace would eventually catch up, and we just worked harder with her in therapy.  

Cheesing at the zoo

But catching up just wasn't meant to be for Grace. She continued to miss milestones and even began to lose some of the skills she had. Then, we found out Grace had INAD, and would be lucky to live long enough to celebrate her tenth birthday.

That made her sixth birthday a tough one for me. No one should have to think that their child's life is already half over when they turn six. They should be celebrating a bright future full of potential and possibilities, not worrying about increasing medical issues, and just how many birthdays they would have left to celebrate together.

Pretty great birthday present, raising $22,000 for INAD research

Those negative thoughts creep into my mind, and this year, made it hard for me to want to celebrate.  I caught myself thinking that Grace wouldn't really know whether or not we had a party. She wouldn't be able to eat the cake or open the presents, and it felt like it was just too much for me.

The birthday girl fell asleep at her party

However, with a little encouragement from Kyle, I was reminded that Grace is still here with us, and I wouldn't want to miss any of her birthday celebrations, even if she doesn't get to celebrate as many as I hope for.

New birthday outfits from PaPa Randy

The week before her birthday, Grace's physical therapist was gone on Friday, so Kyle and I decided to take the girls to the St. Louis Zoo as a family celebration for  her birthday. We had lunch at Pappy's Smokehouse first, and Charlotte got to enjoy her first real baby food, although I think she would much rather have had the ribs her daddy was eating.

Charley came to school with Grace on her birthday

Gracie loved reading books with her class

Then, we were off to the zoo.  It has always been a special place for us. We took Grace on her first trip to the zoo for my first Mother's Day. And she has always loved being outside and seeing the animals.  We aren't sure how much she is able to see anymore, but we know that she enjoy being with us.  And we made the most of the beautiful day, taking lots of photos of the girls.  Kyle and Charley loved hanging out with the penguins, and I loved seeing the flamingoes.  Both girls were sound asleep before we got to the River's Edge to see the elephants and the hippos.  All in all, it was a very relaxing, fun day to be together and celebrate Grace.

The weekend before her birthday was the Grace Race fundraiser for INAD research, so Grace had the chance to see so many wonderful people, who turned out to help us raise more than $22,000 for the study at Washington University.  Each of the kids got a birthday sucker from Grace and a chance to enjoy many of the kids activities.

The Volley for Grace night in Morrisonville was a huge success

After the race was over, we had cake and ice cream with family and friends who were already in town for the race.  Grace was sound asleep from the race, and slept almost the entire way through the festivities, but I enjoyed singing Happy Birthday to her and helping her blow out her candles.  I'm sure everyone already knows the wish we made together.  And I still hope and pray that it comes true.

Grace's actual birthday was a school day, so she had a great time celebrating with her friends. It was class picture day too, so we went to school bright and early for photos before returning later in the afternoon.  After I dropped Grace off at school, Charley and I walked back up to be part of the school festivities. For her birthday treat, I picked out orange Oreos (since that's Topper colors), and we made treat bags of Play-doh and Sixlets.  The kids loved singing Happy Birthday to Grace, and she got to sit right by the teacher when they read Junie B. Jones.  Charley and I left when the kids got ready to go out to recess.

Sharing birthday ice cream with Grandma Susie

And as if all that celebrating weren't enough, that night was a Volley for Grace fundraiser night in Morrisonville.  They raised over $200 for INAD research, and even had the entire gym sing Happy Birthday to her.  I think she definitely liked all the attention.

We ended the evening sharing some ice cream with Grandma and Grandpa Galer, who brought over some very popular birthday balloons and helped us ring in another very wonderful year.

Although I'm sure this year will present a variety of challenges related to Grace's condition, I'm excited for the new adventures they will bring as well. And I plan to cherish each of Grace's birthdays that I'm blessed to spend with her.

mlh