Thursday, September 28, 2017

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.


Sunday, September 10, 2017

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.


Thursday, September 7, 2017

A Race For Grace

Some walked. Some ran. Some were even pushed in strollers. But everyone had one goal in mind, working together to find a cure for INAD, raising more than $22,000 for research.
This year's second A Grace-Filled Journey 5K and one-mile fun run and walk event drew more than 550 participants of all ages to Hillsboro for the start of the race, with another 150 participating virtually in all 50 states and five foreign countries. The race is held in honor of five-year-old Grace Herschelman of Hillsboro, who was diagnosed with INAD (infantile neuroaxonal dystrophy) in November 2014. All proceeds from the race benefit an ongoing research study at Washington University in St. Louis, MO, with Dr. Paul Kotzbauer.
This year's Grace Race raised $22,000 for INAD research
"This isn't just about running," said John Galer, who coordinates the race with his wife, Emily. "This is about stepping up for those who can't, being their legs and helping to find a cure for INAD."
Everyone had their purple ready to go!
Herschelman is the niece of the Galer couple, who reside in Alexandria, VA.
Many local volunteers help prepare the event as well, including members of the Hillsboro High School National Honor Society.
Hanging out with the Galer side before the race
Prior to the start of the race, Galer welcomed everyone and thanked them for their participation, and Pastor Mike Lawton of the Hillsboro United Methodist Church offered a prayer. Just before runners took off, Dr. Kotzbauer addressed the crowd, talking about his history in INAD research, as well as a new avenue he plans to pursue. Kotzbauer and two members of his lab, Dhruva Dhavale and Rebecca Miller, participated in the race.
Grace's cousin, Keelen, definitely enjoyed the race
Several groups also participated together, including the M&M Multisport Club, the Litchfield High School volleyball team, the Hillsboro High School volleyball team and the Fillmore United Methodist Church.
New Grace swag
Following the finish of the race, kids of all ages enjoyed a variety of free family friendly activities, including a petting zoo with the Hillsboro High School FFA, face painting with the Hillsboro High School Art Club, balloon animals with Professor Longhair, kids activities and a bounce house with the Hillsboro Area Hospital Junior Board, snowcones by Joe Snow from Noko and a chance to meet Ronald McDonald, courtesy of McGraw Enterprises.
The Hillsboro High School volleyball team
The Litchfield High School volleyball team
Members of the Hillsboro Sertoma Club also grilled pork patties for lunch, and two of Herschelman's friends, Hazel Holshouser and Dahlia Maass, sold Krispy Kreme donuts to raise money for research.
Hazel sold out of donuts!
"What an awesome way for our community to come together," said Grace's mom, Mary Herschelman. "We are so humbled and honored by those who joined us here and participated all over the world."
Some of our favorite friends came to the race
In addition to having participation in all 50 states, several people joined the cause internationally. Raymond native Kylie Walsh participated in Bangkok, Thailand, while another former Lincolnwood High School alumnus Zeb Hoffman and his wife, Naomi participated in England. Sam Clark, whose son Caleb is affected by INAD, participated in Australia, while Farmersville native and current Marine Konner Nimmo joined the fun in Japan, with several of his fellow Marines. A group from Hillsboro, including Ralph and Anne McLaughlin, Mike and Cheryl Whitten and Gene and Mary Dickenson, participated in Alberta, Canada, while on a bus trip.
Our friend, Konner, and his fellow Marines did the Grace Race in Japan.
"We completed it in Nebraska," said Laura Wagahoff, originally from Raymond. "We are so thankful today for the chance to do this with our family today, and encourage our girls to keep going because we love Grace. We are so thankful to teach the girls a few life lessons, compassion and to keep going because Grace isn't able to walk or ride a bike right now, so we want to do it for her."
Infantile neuraxonal dystrophy is an extremely rare genetic disorder that affects the nervous system. There are around 50 known cases worldwide, and children with INAD lose the ability to walk and talk. Many do not live to see their tenth birthday.
To learn more about Grace's story, visit them online at or find her pages on Facebook and Twitter.
"To everyone who had a part in making this day a huge success, we will forever be grateful," said Mary Herschelman. "We love you all."

School Days

For the past two and a half weeks, I've walked Grace to her class at Beckemeyer Elementary School, charting the same route I walked as a youngster.

Yes, this year, Grace made the transition from preschool at our church to kindergarten at the public elementary school.  Kyle and I did a lot of talking about the prospect of kindergarten over the last few years. Grace had a wonderful experience in preschool, going just a couple of hours each morning for three days a week.

All smiles for the first day of school
We knew Grace wouldn't be able to make it an entire day for kindergarten. She would just get too tired. And one of us would have to go to feed her lunch if she had been there all day.  We have also worried a bit about illnesses in the school, and Grace's susceptibility to them. So, there were lots of reasons not to send her to kindergarten. But the more we talked, the more we knew it was something we wanted her to experience.

One of the things we have loved about her time in preschool was the interaction she has with the kids.  I have worried myself silly that no one would want to be around Grace because she's different, because she can't run on the playground with them or respond to their questions. But I'm constantly amazed at how much these kids love Grace. It actually makes me believe in the future of our world with kids like these taking charge someday.

Meeting her special aide, Miss Anne
We finally decided on two hours a day four days a week. Since Grace goes to physical therapy in Springfield on Fridays, we opted not to send her to school that afternoon because she would be too tired.  I had actually hoped that mornings would be a good fit, but we found out that Grace would have the most interaction with her classmates in the afternoon.  Since she still gets speech therapy and physical therapy outside of school, I wasn't worried about her getting those services during school.  Our hope was to provide Grace a chance to see other kids, which she seems to really love.  In fact, when I took her to school one day this week, a little boy named Paxton came right over to her as soon as we got in the room to greet her. Grace gave him a big smile, and it just warmed my heart.

Grace with her aide and teacher, Mrs. Paden
Even though we don't really know how much Grace understands, we try to give her as many "normal" experiences as possible.  Mom and I took her shopping for her school supplies, and tried to pick out things that a five-year-old girl might choose. I have always loved school and office supplies, so I picked lots of fun things in bright colors and a brand-new Frozen backpack that says "Make Your Own Magic." I liked it better than the one with the rainbow colored poop emoji, but it's hard telling which one Grace might have preferred.

Meeting the new kids in her class
Then, Kyle and I went to parent orientation night the week school started.  I hadn't really planned on going since we had already had Grace's IEP meeting, and we kind of knew where things stood. But Kyle felt it was our responsibility as kindergarten parents to go, and I'm glad that he talked me into it.  It was fun to meet the other parents in her class and see her room.  I did have a little bit of trouble as Grace's teacher talked about all the things the kids would learn that year, and that some of them would even start reading.  Kyle knew I was having some trouble, and he just reached over and squeezed my leg, just to let me know it would be okay.  Sometimes I just need a reminder to celebrate Grace's accomplishments, even if they aren't the same as other kids.

Grace and Charley after her very first day of school
Even though we had already met with her teacher, her aide, the school therapists and special education teacher, I still found myself nervous before taking her to school that first day.  But it didn't take long for me to realize this would be a great experience for Grace too.  All four of us walked Grace to school the first day, and her teacher immediately brought all the students in her classroom one at a time to meet Grace.  I think Grace had a smile for all of them.  We left, knowing she was in good hands, and in for a special treat.

School is hard work!!
In the days since then, Grace has enjoyed reading books and listening to music at school. She loves seeing her friends, and the puppets in her classroom. Each of the kids has a picture on the hallway before the classroom, and Grace even has one of her own.  

Grace's first kindergarten art project
Even though Grace's kindergarten experience will be different than most kids, we're still excited for the book orders and classroom parties, and just letting Grace enjoy her own school experience.

Grace just loves hanging out at kindergarten!
So, when you see us walking home from school, make sure to stop and ask Grace how her day was, you'll probably get a big smile.