Shine In Your Own Way On Rare Disease Day

Today marks Rare Disease Day, an international celebration of rare disease and the patients who live with them every single day.  Kyle and I are joining other INAD families in an effort to raise awareness by using the phrase #beatINAD across all social media platforms today.

As we continue to raise awareness for children with INAD, I got to thinking about my column series this year on lessons from children's books. Last month, I wrote about our love for Pete the Cat, which was an easy place to start.  When Kyle asked me about my second month's pick, I had a little more trouble, with so many great books to pick from.

I settled on two books by Drew Daywalt, including "The Day the Crayons Quit," and "The Day the Crayons Came Home."  If you haven't read either of these two titles with your children, I highly recommend it. We have really enjoyed them.

Grace received "The Day the Crayons Quit" for her birthday one year from Kyle's Aunt Kathy. At the time, we thought it was the perfect book because Grace hated to color, no matter how hard I tried with her.  We figured she probably did wish that her crayons would quit!

As the story begins, Duncan opens his desk to get out his crayons, only instead to find a stack of letters written by the crayons with their grievances to him. Red crayon was mad that he had to work on holidays like Christmas and Valentine's Day. Purple crayon was mad that Duncan colored outside the lines, and yellow and orange crayons were in a fight about which was the true color of the sun. Pink crayon pleaded with Duncan to use him, even though it was a girls's color, and blue and gray crayons both felt they were overused coloring things like oceans and rhinos.

In the end, Duncan decides that he wants all his crayons to be happy, so he uses his creativity and changes the colors that he uses for different things, making a beautiful picture. In his final picture, the whale is orange, the sky is yellow and the ocean is green. It got me thinking about how we all have different talents, and want to be used in our own ways. Maybe we don't always fit the mold of how things are usually done, but we all have something to offer with just a touch of creativity.

Then, at Christmastime, Kyle and I were delighted to find a follow-up book, and put it under the tree for Grace. "The Day the Crayons Came Home" is just as cute, with fun new crayons, like pea green, who changes his name to Esteban the Magnifient because no one likes peas.

At the start of this book, Duncan gets a stack of postcards in the mail from some of his crayons that have been discarded or lost over the years. There's neon red crayon who was used to color a sunburn, and that got left by the pool on vacation. Then there was a light brown crayon, possibly tan or burnt sienna, that had been eaten and puked up by the dog, and now covered in fur. Duncan managed to leave his glow in the dark crayon in the basement after they used it to draw scary pictures for his baby brother. And gold crayon got blunt when Duncan individually colored a pirate's treasure coins.  As a treat, orange and yellow crayon came back, but they were no longer arguing about who was the true color of the sun because they had been left outside, and melted together.

In the end, Duncan was sad to learn about all the crayons he'd lost and forgotten, so he ran around gathering them up. However, by now, they were all so badly damaged and misshapen that they no longer fit in his crayon box. Instead of throwing them away, Duncan built a brand new crayon box where all of the crayons would feel at home, no matter what shape they were.

And that's what got me thinking about Rare Disease Day. We've met so many kids who have different abilities and don't always fit into the normal pictures we paint. But with a little love and compassion, everyone can be included and given an opportunity to shine in his or her own way.

This year on Rare Disease Day, I hope you will take a few moments and help us to raise awareness about INAD, and what a devastating disease it is. But I hope you will also take a few moments and think about ways you can be more empathic and compassionate to those around you, and help them find their own ways to shine in the rainbow of life.


MLH

Team Grace

Although I am a Hillsboro Hiltopper and Kyle is a Lincolnwood Lancer, we have been embraced by teams all over Montgomery County. In addition to the Hiltoppers and the Lancers, Grace now sports team gear from the Litchfield Purple Panthers, Nokomis Redskins and Morrisonville Mohawks. We affectionately refer to all the love and support from high school teams all over as part of Team Grace.

It's a good thing we have this blog, because I can't even remember the number of sporting events we have attended this past year in honor of Grace. We feel SO blessed by the number of teams that consider Grace an honorary member, and she definitely loves all the attention.  We hope you enjoy a recap of a few fun nights from the last few weeks.

Lincolnwood Lancers

At the preview night for the boys basketball season this year, the team started collecting money for Grace and for INAD research. Kyle brought Grace that night, where she caught up with some of her favorite cheerleaders, cousins Kayley and Kensey Armour.

The team continued to collect money throughout the season with a special fundraiser between the junior varsity and varsity games.  Coach Matt Millburg asked us to come to the last home game of the season and be part of the senior night festivities. Unfortunately, we had already promised the crew at Nokomis High School, we would take Grace to a game there that night, but Kyle stood in as a representative for all of us.

Coach Millburg presented Kyle with $1,000 for INAD research.

He was planning to go and take photos at senior night, so he just posed for one himself before he left. They very generously gave us $1,000, which we put up for INAD research.  Just a week later, Will Gunn called Kyle for another donation. The school's community service organization had received just over $500 from the Central Illinois Blood Center, for their hard work in hosting local blood drives.  They got to pick any charity to donate to, and they picked Grace and INAD research.

It was definitely a great night to be a Lancer.

Nokomis Redskins

It was also a wonderful night to be a Redskin!  Several weeks before, the Nokomis Athletic Club asked if we would bring Grace to a game when the Redskins hosted the Hillsboro Hiltoppers. But we were at Walt Disney World that weekend, so it didn't work out.

We were SO honored that the Nokomis Athletic Club honored us at a basketball game.

Instead, they picked one of the final home games of the season, and Kyle met Grace and I in Nokomis after he finished up his duties in Raymond.  We spent some time in the lobby visiting with Nokomis Athletic Club members Julie Knodle and Missy Keiser, who had a bright red Arrowhead Open shirt for Grace to wear!

Grace got a beautiful new purple and white quilt, made by Marian Kimbro.

We made our way to the gym, where we found a seat in the front row so Grace could watch the basketball game.  At halftime, Julie invited us down to the floor for a special presentation. We knew they had a donation for the INAD study, but they totally spoiled us the night we were there.  In addition to giving more than $600 for INAD research, they presented us with a purple and white quilt, made by the boys basketball coach's mom, Marian Kimbro.  She donated the quilt to the group with the stipulation that it had to be used for something special, and they were honored to give it to Grace.

The girls basketball team had some presents for Grace, including basketball roses.

Then, members of the girls basketball team gave Grace some basketball roses, which are sitting in a vase on her dresser, and a picture frame with her name in the middle. All the players on the girls team signed the frame, and we hung it up in her room as well.  The boys basketball team presented Grace with a red Redskins visor and some red and black balloons, which have always been one of her favorites.

Kyle had the chance to tell our story.

Kyle talked a little bit about how honored we were to be part of the family, and thanked everyone for their generous donations.  We sat down to watch the end of the game, and Julie shared her popcorn with Grace, which was also a huge hit. After the game was over, a fan from the opposing team handed Kyle a donation for the study, and said they would keep us in their thoughts and prayers.

Snuggles with my sweet Grace.

We are always thrilled for a chance to share Grace's story with our community and make new friends along the way.

Lincolnwood Junior High Volleyball

This week, we headed back to where it all started, the Lincolnwood Junior High School volleyball team. Last year, Kayley and Kensey were eighth grade members of the team, and they were one of the first to join Team Grace last year.

Many of the team members wore purple ribbons in their hair for Grace.

At the start of every game, they had a table set up to hand out gracelets, and also take donations for research. For the past two years, they have offered a Serving for Grace fundraiser, where a donation gets you a chance to enter your name into the contest. Between the seventh and eighth grade games, they draw a few names, and the lucky winners get the chance to serve a volleyball onto targets on the other side. Those who are successful win great prizes donated by local businesses.

Kyle enjoyed his chances to Serve for Grace.

Coach Kimberly Denny invited us to the last home game of the season this year, and we arrived just in time for the end of the seventh grade game, so we found a spot on the bleachers with Grandma Kim.  And before long, they started the final Serving for Grace fundraiser of the season. Although some of the participants got close, no one managed to hit the target this night. But as an added bonus, the last person called up to serve for the evening was Kyle, who took it in stride, even if his serves didn't make it close to the targets.

The eighth grade team members brought presents to Grace.

We looked out into the crowd, where so many of the fans were wearing purple in honor of Grace. It's just so amazing to see such love and support from a dedicated community.

Just before the eighth grade team members were honored, they had a special presentation for Grace. We took her in her stroller to the middle of the gym, where the four eighth graders gave her pink and purple flowers, orange and purple balloons, a gift card to Dairy Queen and $650 for INAD research. Of course, the biggest hit for Grace was the balloons, and we were thrilled to be able to donate even more to the research.

So blessed to be part of the Lincolnwood family.

I got the chance to thank everyone for their generosity, and Kyle helped Grace play with her balloons and flashing smiles to the crowd.  We made our way back to our seats to watch the eighth grade team lose a close one in three games.

After the game was over, we headed over to thank Coach Denny, who made Kyle promise not to use Grace's Dairy Queen card himself. Grace was also greeted by several young fans, including Jaylee and Paislei Krager, who always make time to stop and see her every time they can.

Coach Denny got the chance to talk to Grace before the game too.

This is the third time Coach Denny and her teams have recognized Grace, and we are blessed beyond measure to be part of the Lancer family.

County Baseball Tournament

Up next for Team Grace will be the County Baseball Tournament on Saturday, April 16 in Litchfield. All four high schools will be represented there, and it will be the culmination of the temporary license plate fundraiser.

The specialty license plates, featuring "A Grace-Filled Journey" logo, arrived this week, and we can't wait to put BEAT INAD on our two vehicles. It's been fun to see people post photos on Facebook of their vehicles with a new Grace plate, and the plates may be used through April.

Check out the new Grace shirts with all the school logos!

As part of the festivities, the Litchfield Student Council is selling new "A Grace-Filled Journey" shirts, with all four county high school mascots on the back. They read "Go Mont. Co Beat INAD Win the Battle." Mine has already arrived, and Kyle's and Grace's should be in soon too.  We even heard that Tessa Steffens and her softball teammates at Purdue Calumet will be wearing the new shirts to warm up this season.  How cool is that?!

When we started this "Grace-Filled Journey," we hoped to raise around $10,000 for INAD research and share our story to raise awareness. More than $100,000 later, we hope to take our story and our platform to a national level this year. With community support like this, Team Grace is gonna take on the world. Thanks for being part of our "Grace-Filled Journey."

MLH

Church Sweethearts

The Herschelman family had a new sweetheart this year, thanks to the generosity of our Hillsboro United Methodist Church family. It was a week of love and celebration, and we were so grateful to be a part of it.

Everything started the day we returned from our trip to Walt Disney World in Florida  We returned on a Monday afternoon, which was a postal holiday, so it also meant it was a paper night.  While we sat at our desks working on the next edition, a couple from our church showed up with snacks for the whole office. There was a tray of cheese, meat and crackers and a tray off sweet treats, like cookies, brownies and Rice Krispy treats. It came with a special card just to say that our church family loved us and was praying for us.  I think our newspaper family was just as excited as we were for the treats.

We didn't think a whole lot else about it, until the following night, when our pastor's husband brought dinner to the house. It was a delicious feast of salad, breadsticks and pasta, and there was plenty to last for several meals.  Even Gracie Lou loved the pasta!

Pastor Joy wore her Grace shirt and asked everyone to pray for Grace on Saturday.

On Wednesday, I saw a photo on Facebook of our pastor wearing her Grace shirt, and asked others to join her in prayer on Saturday for Grace and our family. We were also treated to another night of treats with our newspaper family on paper night. This time, it was a basket of fruit and another of candy.  And I think we enjoyed every bite, as well as a chance to share with our coworkers.

Grace with her teachers when her special balloons arrived.

Thursday was Grace's day to shine, as all three of her preschool teachers wore their Grace shirts, and some of her classmates did as well.  Grace got her very own balloon bouquet delivered to school, and her teacher sent me a video of her just giggling and giggling.  Even as a baby, balloons have always been one of her very favorite things, and we got to enjoy them at home too!

Grace loved playing with her balloons with her friends at school.

While Grace was napping on Friday, I got a text from one of our church members, who asked if we were home. She delivered a big popcorn shaped tub, full of candy, microwave popcorn and soda, as well as gift card to the video rental store in town. It was everything we needed for the perfect movie night.  And I have to say, we've enjoyed it all.

Saturday was a day of prayer for Grace, and we are SO blessed to have so many people all over the world praying for Grace and all the children who are battling INAD.  

Which brings us to Sunday. As we walked into the sanctuary for worship, we saw many of the church members wearing various Grace shirts from different fundraisers.  My cousin Phil's daughter, Izzy, was wearing her purple Grace shirt from the race, and her mom had made her baby brother, Henry, his own Team Grace onesie.  It was so cute.  And one of my favorite parts of the service was listening to Izzy, who is three, say the Lord's Prayer. 

The special service included some very special songs, like Amazing Grace and Sweet Sweet Spirit, which was my Grandpa Hutson's favorite song, and I chose it for both our wedding and Grace's baptism.  During the service, the pastor talked about how the church family had decided to adopt us as sweethearts in honor of Valentine's Day this year. She talked about what an inspiration we have been on a very hard journey, and said they wanted to show us how much we were loved and cared for. They even presented us with a tree full of gift cards for gas and local restaurants to some of our very favorite places.  

Although Kyle and I don't' necessarily like to be the center of attention, we were truly touched by the outpouring of love and support, not just that week, but all year round. We are so grateful for all the people who lift us up in prayer. It gives us such strength and such hope for Grace. From the very bottom of our hearts, we love each and every one of you on this "Grace-Filled Journey."

MLH