"Love one another and you will be happy. It's as simple and as difficult as that."
One of the hardest things for me to accept with INAD is the realization that I may never get to hear the words, "I love you, mommy." Grace does say ma ma sometimes, and I truly think she tries to say "I love you," some. But ask me what I want most from a cure for INAD, and it's to hear those words.
That being said (or written), those are still just words. And words without actions are meaningless. Grace may not be able to SAY "I love you, mommy" but she sure finds ways to show me every day. There's her beautiful smile every single morning when I go into her room, and then countless other times throughout the day. There's my favorite snuggles when she's tired, and even pats on the back when you hold her. Yup, there's no doubt in my mind that Grace loves me, even if she never has a chance to say those words.
And I truly believe that will be one of her lasting gifts to our community, showing others how to love one another. Our community has truly responded in kind, showing just how much they love us and love Grace. Our blog has been FULL of wonderful acts of kinds and awesome events people have planned for us. Today's blog will be full of more wonderful ways we have been shown just how much we are loved.
Creative Flair T-Shirts
Earlier this spring, Renee Wynn, owner of Creative Flair in Litchfield, asked Kyle if she could design a T-shirt for Grace as a fundraiser for our family and the study, and we were very excited. At so many of the events we have been to this spring, we have thought it would be cool to have Grace shirts to wear, and Renee is making that happen for us.
|These are the AWESOME shirts you can buy from Creative Flair in Litchfield.
Well, not just for us . . . anyone can get a Grace shirt. They come in pink and black, and are just awesome. I can't wait to see people sporting their new "Grace Filled Journey" shirts when we are out and about. There's still time to order some if you are interested. Just click the link, and the shirts can be shipped to your home or picked up in Litchfield.
Casey's General Stores
Just after we started our fundraising efforts for the INAD research study at Washington University, my good friend, Jill Paden, had a great idea. She manages one of the Casey's General Stores in Hillsboro, and she asked if she could put out a canister on the counter to collect spare change with a photo of Grace and some information about INAD during the month of February.
After talking to her boss, the two of them hatched an even bigger plan, to include canisters at all three Casey's stores in Hillsboro and the two in Litchfield, and the fundraiser would run the entire month of March.
|Grace is all smiles with the managers of the Casey's stores who helped us out.
It was pretty cool, we launched it in the newspaper on February 28, which just happens to be Rare Disease Day.
And let me just tell you . . . spare change adds up. After the first full week the canisters were out, Jill brought the money by the newspaper office. Are you ready for this? It was nearly $900. . . in just one week. After all four weeks, they ended up raising over $2,300, and we were so very grateful. It's just a testament to our awesome community, and they way they continually show up to help others in need.
|We met again after the fundraiser, and they bought Grace a bell and a package of M&Ms. She was thrilled.
Litchfield Middle School Dodgeball Tournament
Another friend called me in April. Lori Heise, who is the daughter of my dear friend Martha Sperry, is the Student Council sponsor at Litchfield Middle School. She called to tell me her group had planned a dodgeball tournament as a fundraiser for Grace.
The tournament took place during the school day among all three grade levels. Students could pay $1 to play or $1 to get out of class and watch the tournament. They had one winning team in each grade level, and then an overall champion team.
|All these awesome kiddos helped raise money in the LMS dodgeball tournament.
I felt honored to bring Grace by for a newspaper photo op, and a chance for her to meet the students. That's been one of our favorite things to do to take Grace around to the fundraisers to meet the people that are showing us such love. It's fun to see the kids talk to her and watch out for her, and she always wows them with her gorgeous smile.
Lori told me she would gather up the kids for the photo, and I think it was nearly the entire student body that participated in the fundraiser. The kids raised over $150 for the study, and had a pretty good time at the tournament too.
Hillsboro Lions Club Pork Patty Sale
I think it's safe to say that I have eaten hundreds of pork patties in my lifetime, and believe it or not, it's usually for a pretty good cause. Area organizations host pork patty sales at lunchtime throughout the summer, and we can usually be found stopping by for a quick bite to eat.
Chuck McDowell, president of the Hillsboro Lions Club, called in March, to ask if the Lions Club could host a pork patty fundraiser for Grace on April 17. We already had plans to be out of town that day, so we told them they could do the fundraiser, but we wouldn't be able to come by. Out of all the fundraisers and events this year, I think this is the only one we haven't been able to attend in person.
About a week after the pork patty sale, another club member, Earl Meier, called to arrange a photo opportunity for the newspaper. He wanted us to meet them at Tremont Ridge Assisted Living Facility in Hillsboro for a very special presentation.
|The Hillsboro Lions Club presented us with $1,500 from the pork patty sale.
Since we were gone the day of the fundraiser, we didn't really know how things went. Apparently, they went VERY well. The Lions members said they sold more than 500 pork patty sandwiches, and presented us with a check for $1,500. They told us that people were still stopping to try and buy pork patties as they were closing up, and said others came just to give a donation.
But the biggest supporters of the pork patty sale that day were the residents of Tremont Ridge. They ordered 50 lunch meals for all their residents and staff in support of "A Grace Filled Journey." When we stopped at Tremont Ridge, they had a special gift for Grace too. Administrator Ceressa Waldrup presented Grace with her very own pink, sparkly Tremont Ridge shirt, as well as a monetary contribution from their residents and staff.
|Grace got her very own sparkly Tremont Ridge shirt!
We also had a chance to share our story with residents and thank them for keeping us in our thoughts and prayers. We even promised to bring "Gracelets" back for all the residents. Ceressa invited us to stay for lunch, and we couldn't stay that day, but we plan to return one day this summer to enjoy some time with the residents.
Starr Shooters 4-H Club
As a ten-year 4-H member in my youth, I've always had a special place in my heart for the county's 4-H program. I also served as an adult on the 4-H Foundation, where I got to know the county's Extension Director, Denise Kistner.
In April, Denise called me to say that her daughter, Erin's 4-H club, the Starr Shooters, wanted to host a bake sale and an art sale to raise money for the research study. At their last club meeting, Erin had shared our story with her fellow 4-H members, and they wanted to help.
It was the same day as the Witt City-Wide yard sale, and Kyle, Grace and I decided we would wander over there for some baked goods. Since we aren't real early risers, we didn't get over at the very beginning, and they told us what a success the bake sale had been with only a few plates of cookies left.
|Erin painted this Cookie Monster picture that we bought at the art sale for Grace's room.
Erin had made a special bottlecap necklace for Grace with Olaf from Frozen on it. We also purchased a Cookie Monster painting that Erin had made or Grace's bedroom. Before we could make our cookie purchases, another shopper asked if she could buy some cookies for Grace. She picked out some sugar cookies, and Grace very graciously shared with us too.
The dedicated 4-H members and their families raised $220 for the INAD study, and when Erin and her mom brought the donation by the paper, they also brought some cookies with them. I think they definitely know the way to our hearts. And Grace had never met a cookie she didn't like.
I'd like for you to meet one of the most remarkable women I know, someone who's always been such an inspiration to me. And she's the most generous too.
We have known Alexis for a long time, mainly because my mom stops by to see dad, Big Ed Wernsing, every Thursday on an ad call for the paper. I have filled in for mom a few times, and happened to catch Alexis at the store with her dad. She's always loved visiting with Grace. She even sent a special stuffed animal home with Grace from one trip to the store.
Here's something you should know about Alexis. She was not projected to have a long life, but well, sometimes doctors are wrong. This spring, she continues her studies at the University of Illinois in Champaign, where she is a graduate assistant and hopes to be a professor someday.
Oh, and she celebrated her 40th birthday. And instead of asking for anything for herself, she asked only for thoughts, prayers and donations for our family. To say I was honored would be a bit of an understatement. It was the most special gift anyone could ever give.
Alexis finished up her spring semester at school and stopped by the newspaper office with a donation for the study as well as a stuffed animal from Grace. I told Alexis I wasn't sure if Grace could play with an Illini stuffed toy, since mommy is a Mizzou Tigers fan. But Alexis said it was purchased by a friend of hers, who wanted us to know people are praying for us in Champaign.
It was the best day when Alexis and her mom stopped in at the office to see us. And we have an ice cream date sometime this summer too. We can't wait!
Cornerstone Academy Change Wars
Another e-mail came from a friend later this spring. Morgan Meade is the Curriculum Facilitator at Cornerstone Academy and Chrismont School in Nokomis. She said they wanted to host a "change wars' fundraiser for the INAD study. We were so thrilled. It's been neat that every school district in our county (and one outside it) have all joined our "Grace-Filled Journey," and we have loved visiting all the schools.
The "change wars" was held the last few weeks of May, and we took Grace to the school on May 26 to meet some of the students. We talked to the middle school and high school classes, as well as one of the elementary school classes.
The middle school class was the one that hosted the "change wars," and they studied a unit about community service. During their studies, they cut out articles from the newspaper about Grace to create a few posters for the hallways. They were awesome, and my favorite one included student writings about "who, what, when, where, why and how."
Having the chance to meet the students was fun for us, and it gave us a chance to tell them thanks for all their hard work and that they were making a huge difference for the study. The older students were pretty quiet, but the elementary students had a million questions for Grace, about her favorite colors and foods, and what she liked to do. They all took a turn coming up to say hi in person before departing for their classrooms.
|Some of the staff at Cornerstone with Grace and one of the posters the students made.
In the end, the winning class that brought in the most change earned an ice cream party on the last day of school, and they raised more than $150 for the study. It was just an awesome experience, and we feel so blessed they did this fundraiser for Grace.
All total, since the beginning of the year, we have been able to raise nearly $40,000 for the INAD research study at Washington University, thanks to our very generous family, friends and community.
There are some days that I just wish, like Dorothy, I could click my ruby red slippers and head to a world where there is no INAD, where I could run and play with Grace all day every day. But, then I come back to reality, to a world where my family is so blessed to have been shown love time and time again. And I realize, there truly is no place like home.