The Best Christmas Pageant Ever

It was truly the best Christmas pageant ever, although I must admit I'm probably quite biased.

This week marked Grace's Christmas program with her preschool classmates, and it definitely didn't disappoint.  It was so much fun to see all the kids dressed up in their holiday best, and Grace looked extra cute in her red and white striped Santa dress.

Gracie and her dad are all ready for the Christmas program.

Believe it or not, we arrived at the church early, and Grace had plenty of time to see her friends before the program, while we found our seats.   I think she got her photo taken with all the girls in her class before they even came down to the sanctuary.

Grace and her friends before the program.

After an introduction from her teacher and a few Christmas carols with the congregation, the kids filed into the church, and Grace's aide, Alex carried her up the aisle. They even stopped at our pew for a quick wave.

The program included about ten Christmas songs, including some favorites like "Jingle Bells," "Rudolph, the Red Nosed Reindeer," "Away in a Manger," "Happy Birthday Jesus," and others.  

Grace is all smiles while she plays the maraca during the program.

Each child got to be featured either singing or playing on an instrument in several songs. Grace's was "Rudolph the Red Nosed Reindeer," and she got to play a maraca. Alex helped her, and she really seemed to enjoy shaking it. 

Then, near the end of the program, she and several of her friends in class got to sing "Go Tell It On The Mountain" together. That song is extra special in our family because my cousin Keith sang it as his solo when he was in the preschool program 20 years ago. It's long since been a family favorite.

Grace singing with her friends to "Go Tell It On The Mountain."

What made it even more special tonight is that Grace shared the stage with some of her friends singing to her. We feel so blessed that the students in this class love Grace so very much. They are always playing with her, reading to her, talking to her and making sure she's okay.  When I dropped her off this morning for school, the girls were just waiting for her to sit in her chair so they could play with her.

Class photo after the program.

I smiled from ear to ear during tonight's program, watching the kids sing, keeping my eye on Grace and how much she was enjoying it.  I had a lot of trouble watching last year's program, because I was so hurt that Grace wasn't the one singing or participating in the way I expected her to. But I've come a long way. Grace may not be able to sing the words to the songs with her classmates, but she truly enjoys the music and being a part of the program.

Cheesing with Mommy after the program.

They close every program with "Jesus Loves Me," which has always been one of her favorite songs. I felt the tears well up in my eyes as I watched her break into a big grin listening to the kids sing her favorite song. But this year, they were happy tears, because I was so proud of Grace for doing such a great job during her program. 

Both sets of grandparents came to see her in the program.

mlh

The Nutcracker

Our faithful blog readers might remember one of the first Grace-Filled Journey fundraisers back in March, Feet of Grace, with our friends at Fusion Dance Center. Well, they have been hard at work again, and raised another $740 for the INAD research study.

Several weeks ago, Fusion Dance Center owner Heather Edwards told me they wanted Grace to be one of the recipients of the proceeds from this year's The Nutcracker performance. We are so humbled and honored they have adopted us into their family.

We had fun telling the dance girls about Grace's story at their pizza party.

Heather asked if Kyle and I would bring Grace by the studio on a Saturday in September. The dancers were having a pizza party, and she wanted us to share part of our story. We also got to hear more about the story of the other recipient, the Bond County backpack program, which provides food for kids in need throughout the weekend.  It sounds like such an awesome program, and one that's very much needed.

We are always delighted for the chance to share our story and more about Grace, so it was fun that day to see the kids. They all love Grace so much.

The performances of The Nutcracker were the first weekend of December in Greenville, and we had really hoped to take Grace. But it was a busy weekend for us, and when Saturday evening rolled around, she was just too tired. We stayed in, though it wouldn't have been the first time she had slept through The Nutcracker. Last year, Aunt Mikaela got her tickets to see the favorite ballet in St. Louis, and she fell asleep on Grandma Kim's lap about 15 minutes into the show. But she really does love the music.

We were blown away that the dancers raised another $740 for the INAD study!

This week, Heather asked if we would once again come by the studio for a check presentation.  It works out well that we provide our own publicity. And we were truly blown away by the amount of money they raised.  We've already started collecting again for the next donation to the study, and their $741 put us over $3,000. We continue to stand humbled and amazed at the generous souls who have embraced our story.

Grace and I had the best seat in the house to watch the dancers.

Before we left after the photo, one of the girls asked if they could show Grace a new dance they are learning to "Colors of the Wind" from Pocahontas. Grace and I sat in front of the mirror, and she grinned almost as soon as the music started. I couldn't help but smile as she laughed and grinned as the girls danced around the studio. She especially seemed to like the parts where they were sort of running, which made a loud noise on the floor that she liked.  Grace loved it, and the girls really seemed to love how much Grace liked their performance.

Grace was all smiles watching the dancers.

Our grateful thanks to Fusion Dance Center for being such a special part of this Grace-Filled Journey. We can't wait to come back and see the girls dance again soon.

mlh

A Very Generous Community

Today, we give thanks to be part of one of the very best communities in the world. It's a small community, a county of only 30,000 in central Illinois. But this community never lets its size get in the way of its giant and very generous heart.

Just over a year ago, we learned that Grace had INAD, a terrible, awful disease that would rob her of her abilities to walk and talk, and possibly even take her life before her tenth birthday. And while it takes those things from Grace, it also takes simple things from me and Kyle. We may never hear Grace say "I love you," and though I know that to be true, it's just another way INAD steals happiness from about 30 families all over the world.

Two happy girls with a check for $70,000 for the INAD research study.

But Kyle and I didn't have much time to be sad about INAD. Shortly after his column (and our very first blog) was published, this tiny county in the middle of nowhere, showed us love and compassion that we will never forget. There were Facebook posts, messages, cards, meals and more offers to help than we could ever repay.

Slowly, we started to get offers to help with fundraisers for anything that we needed. Since our insurance really covers most of Grace's medical needs, we didn't feel like that was appropriate. We thanked everyone for their offers, but decided against allowing fundraisers on Grace's behalf.

And then another INAD mom, Kristin Phillips, asked if we would consider helping to fundraise for a research study. She was looking for about ten families who would be interested in raising from $10,000 to $30,000 for this study, which would cost about $100,000 to get started.

I took a big gulp and thought about trying to raise $10,000, not even knowing where to start or even if it was a good idea. But Kristin had given me the name of the doctor who would do the project, and I googled his name, discovering he worked at Washington University in St. Louis. Of all the medical research institutions in the entire world, this one was virtually in our back yard. And we also know some amazing things have come from Washington University.

So, although I was hesitant, I told Kristin we would try to help with the fundraising efforts, and we joined the crowdrise initiative she had started, making a place to donate online in honor of Grace. We set Grace's goal at $5,000, and it didn't take long to reach that mark. That website, which is still active has raised nearly $7,000 in Grace's name.

Then fundraising events sort of took on a life of their own.  It started with a few high school sporting events, and then our family ordered 2,500 purple wristbands, which have affectionately become known as "gracelets." We never really intended to sell them, just pass them out as a reminder to keep Grace in your prayers. But as people stopped in to pick them up, they often left a donation.

I kept Kristin up-to-date on how our fundraising efforts were going, and she let me know how other families were doing. In March, Dr. Paul Kotzbauer needed $10,000 to get the study started. We had $8,000 at the time, so I carefully wrote a check, sealed it in an envelope and mailed it to Washington University.  It was received, and the study was started.

And then things really took off. From bake sales to raffles, T-shirts, homemade bracelets and car decals to more sporting events, which also helped us to raise awareness. Along the way, I kept all the money in a savings account, which continued to grow and grow. 

I kept careful track of money we sent to the study outside that savings account too.  From memorials for friends and family members to donations straight to Washington University, that number continued to grow too.

We tried our best to be at as many of the events as possible, though we had little to do with most of the planning. In June, Kyle organized the Grace Cup, a senior all-star soccer game, and my family planned A Grace-Filled 5K in September, just before Grace's fourth birthday.  It ended up raising $25,000, and we were honored to have Dr. Kotzbauer and four members of his research lab there to participate.  We gave him an honorary "big" check that day with a promise to bring all that we had collected later this fall.

Officially giving our $70,000 check to Dr. Kotzbauer.

He's always very gracious to meet with us when we are in St. Louis for Grace's appointments, and he made time for us on the afternoon of Friday. Dec. 11. We had told him, we had a check for $50,000, but thanks to a generous community, we ended up having $70,000, which came as a surprise to him. Grace even sported her own Washington University T-shirt for the occasion.

Dr. Kotzbauer told us the study was ongoing and that they were making good progress. He said the funding would go a long way to support their efforts, and he asked us to thank our community on a job well done, adding that our community's support inspires him in all his endeavors as well.

To date, from the first crowdrise donations to fundraisers this fall, we have donated around $95,000 in Grace's name to the study.  And that's solely because of this tiny community with the biggest heart. We will forever be grateful for your love, support, prayers and your generosity.

I left about $2,500 in the savings account as we continue to participate in a variety of fundraising efforts. We will keep collecting until it's time to bring another big check to Dr. Kotzbauer and his team.

There's no way to know if his study will directly help Grace or not. Only God knows the ending to our journey. But this much I know. Being part of this study and raising money to support it gives me great hope for Grace and for future generations of kids with INAD. 

The journey is never easy, full of bumps and tears. But more often than not, the journey is full of smiles, laughs and caring people who show us over and over again that we are never alone in our quest to #beatINAD.

mlh