Hawaiian Adventure Is Dream Come True

Cinderella sings that "a dream is a wish your heart makes." And our dream came true this month with Grace's Make-A-Wish trip to Hawaii.


When Grace was diagnosed with INAD in November, we decided we wanted to give her every opportunity that life has to offer. We didn't really want to call it a bucket list, because we felt like that seemed more like an ending, and even though our time with Grace may be short, we still hold out hope for some sort of miracle.


Thanks to our awesome community, Grace has had lots of really great opportunities, like dunking a basketball, throwing out a first pitch, earning trophies and even being queen for a day.  Kyle and I are still compiling a list of things we want to do with Grace, but we had a chance to do some awesome things in Hawaii this month.

Grace's first experience at the ocean.

 In January, Kyle contacted Make-A-Wish about the opportunity of doing something for Grace.  Since she's always loved soccer balls, initially he was thinking about something when the US women's soccer team played at Busch Stadium in April. However, it takes longer than that to get a wish set up, so we started talking about other opportunities with the volunteers.


They do a wide variety of things to make kids' wishes come true. From room redecorations to shopping trips and pools to playgrounds, they make sure to take care of each and every child.


One of our volunteers suggested a dolphin experience in Hawaii, and since Grace loves the water so much and animals, we thought it was a great idea. Then, she started telling us about the Disney resort near Honolulu, and we were sold.  We didn't even realize there was a Disney resort in Hawaii, but we knew Grace would love a chance to see Mickey and Minnie again.


It was kind of hard for Kyle and I in the beginning because the child is supposed to make the wish themselves.  That just wasn't possible with Grace.  We just had to do the best we could to try and pick something that would mean the world to her.


Once we decided on Aulani, the volunteers and wish coordinators worked together to make it an unforgettable trip.  And they don't leave anything out.  We were picked up by a limo at our house and taken to the airport, and they also brought us home at the end of our trip.  They provide money to check your luggage at the airport, for meals and even souvenirs for Grace, and she definitely came home with a few new Minnie Mouse items.


As the trip neared, I know we were nervous about taking Grace so far from home, but excited at the same time to share such an awesome experience with her.   It was a long flight, but Grace did awesome, and the view from our balcony alone made the trip worth it. During the week, Grace got her own private meet and greet with Mickey and Minnie, the chance to kiss a dolphin and the opportunity to swim in the ocean for the first time. 


For Kyle and I, one of the neatest experiences of the trip was watching Mickey and Minnie interact with Grace that very first time. They discovered she liked to play peek-a-boo, and got right down by her and did just that.  Throughout the week when we would see them, they remembered Grace and would get down to play peek-a-boo with her.  It was amazing to see her smile.


I would have to say Grace's favorite part would have been the swimming, both in the pools at the resort and in the ocean.  We took her new life vest with us, and she absolutely loved the water.  There were parts of some of the pools that were shaded, so she could even open her eyes while we were swimming.  And she loved rocking in the waves of the ocean.  We swam out there for over an hour one day, and it was so soothing to her that she even fell asleep.  We tried to make sure we did some swimming every day because that seemed to be what Grace liked the best.


Although Kyle and I had hoped to tour Pearl Harbor when we were there, it just didn't work out.  It was much easier to stay on the resort and just relax.  And besides, when I traveled with Mrs. Barb Hewitt, she always said that you have to leave one thing undone so that you have a reason to go back.
For us, the Make-A-Wish trip was such a special time just to be together as a family.  Grace loved having her mom and her dad all to herself for an entire week, and for us, it was a break from doctors' appointments, therapy sessions, and even INAD.  And for that, we will always be truly grateful to the Make-A-Wish organization.


Just before we left, we had a chance to share our story at the annual McKay NAPA Make-A-Wish charity golf tournament in Godfrey. McKay has raised thousands of dollars over the years for Make-A-Wish, and this year their goal is to raise $50,000. If you get the chance, make sure and support their efforts, to help make wishes and dreams come true for other families.  By supporting Make-A-Wish, you truly are providing families with a once-in-a-lifetime opportunity that they will never forget.  I know we won't.

The Grace Race Goes Global!

While Kyle was golfing in the TEAM golf tournament this morning in Raymond, Grace and I decided to help stuff some of the race packets for A Grace Filled Journey 5K event.  It's hard to believe that it's only one week away!

Grace has her bib, and she's ready to roll!

Thanks to some very generous sponsors, those participating will not only get a purple Grace shirt, but also a drawstring bag, special race bibs, can cozies and a few other goodies.  Since Grace slept in some this morning, the volunteers were mostly done stuffing bags when we got there (they were already to the letter P).  But we got a chance to help a bit, and Grace enjoyed her supervisory duties that came with a donut for breakfast.

As of this blog, there are 520 participants signed up for the Grace race.  And we are so excited to see everyone next Saturday.  We feel so blessed to have so many of you on our Grace-Filled Journey.

Grace helped to supervise the packing of the race bags.

One thing that has really been fun to watch as people have signed up for this event is the virtual participants.  When Johnny and Emily started planning this, some of their friends said they wanted to join the fun, but couldn't get to Hillsboro that day. They wondered if we had ever thought of adding a virtual element, meaning that participants could sign up and run or walk wherever they were that day. How awesome is that!

As we started to add virtual states, the race literally went from coast to coast with Kyle's aunt and uncle the first to sign up in California, and some of Johnny and Emily's friends signing up to run in the nation's capital.  Then we added a participant in Alaska, Michigan, Texas, Nebraska, and the states continued to grow. Currently, there are runners signed up to participate on Sept. 5 in 16 different states. Although not officially signed up some Hillsboro residents will be walking a 5K that day as they await the birth of their grandchild, and some of Kyle's family signed up virtually in Missouri, but they will be in Florida that day and do the 5K there.  That makes 18 states - we're almost to participants in half the states!

The virtual map for participants.

Those participating represent the states of California, Nebraska, Illinois, Texas, Virginia, District of Columbia, Wisconsin, Alaska, Michigan, Arizona, Missouri, Georgia, Colorado, North Carolina, Montana, West Virginia, Utah and Florida. If you don't see your state on there, then get signed up today!

Then, I got a message from Kylie Walch of Raymond, who I had just interviewed for a story in the paper.  She is teaching in Mandalay, Myanmar in Asia for the next year and wondered if she could do the Grace race there.  We loved the idea of going global.  Another of my friends from high school, Kyle Stewart, will be joining the fun from London, England in Europe and Hillsboro native Allison Ernst will join the race from Melbourne, Australia.  

These are the signature bibs for the race.

So, not only will there be participants in nearly half the states this Saturday, there will be four countries on four continents as well, helping to raise awareness for INAD, literally around the world.

All the race goodies are in these bags.

There's always time to join the Grace Filled Journey too!  We've been packing race packets all weekend, so we may not get you a shirt or some of the goodies, but we'd love to have you join us in Hillsboro or represent your state on the virtual map.  I am SO excited to see all the photos from race day from around the world. For more information or to sign up, visit www.facebook.com/GraceFilled5k.

And if you're not a runner or a walker, come out to Hillsboro High School that day anyways. Members of the Hillsboro Lions Club and the Hillsboro Sertoma Club will be serving up lunch. And there will be plenty of family friendly activities, including face painting, a bounce house, Ronald McDonald, Professor Longhair and more. All the kids activities will be free to everyone on race day as a way to say thank you to a very special community.

Grace said the race packets are ready to go!

I have lived in Montgomery County nearly my entire life, and have seen time and time again how the communities pull together when there is a need.  But until Grace was diagnosed with INAD, I had never been on this side of that. We have been so humbled by the generosity of the community in both organizing and supporting fundraisers since January, and I am proud to say we have raised more than $50,000 for the Washington University Research study. With your help, I know we can #beatINAD.

We'll see you at the race!

MLH

Those Crazy Characters

Shortly after we announced Grace's diagnosis at church and at Grace's preschool, members of the church's preschool board asked us if they could do a fundraiser for Grace.  One of her teachers said Grace really liked the puppets at school and thought a puppet show, called "Giggles for Grace," could be a lot of fun and raise money for anything that we needed.

Grace was very excited for the puppet show tonight, and she got a brand new Minion friend!

At the time, we thanked the board for their offer, but said we weren't really going to do any fundraisers.  Our insurance covered all of Grace's needs, and we just weren't sure about fundraisers yet.  Then, we found out about the INAD research study, and have been so humbly overwhelmed by the generosity of our community and beyond.

We told the preschool board at church they could do a fundraiser if they wanted, and we ended up deciding that fall might be better.  The preschool checked with Mr. Rick Cina, who works for the Hillsboro school district, but also puts on a really great puppet show, and the kids all love him.  It was originally scheduled for Aug. 21, but when Grace was granted her Make-A-Wish, Mr. Cina graciously moved it back one week.

The kids just LOVED Mr. Cina's Crazy Character Comedy Show.

And tonight was the night.  Since Kyle was covering high school football, Grace and I went with mom to the Hillsboro Moose Lodge.  We got there about 20 minutes before the show started, and were so excited to be part of such a special night.  Volunteers had to set up more chairs twice to accommodate the crowd, which hit nearly 300.  The church also provided free popcorn and Capri Sun drinks to everyone that came.  Admission to the show was free too, and it was just a really special night.  They even made several photo collages of our family, and I enjoyed looking at them.

Before the show started, I got Grace some popcorn and we made our way to the front of the room.  As we headed that way, a little girl named Angel Grace, and her mom, stopped to say hi.  Angel had asked her mom to make Grace a stuffed Minion to play with, and they brought it for her tonight.  It's just the perfect size for Grace to hold, and she even snuggled it when she went to bed tonight. 

Grace was very excited to see her preschool teachers at the show tonight.

Then we got ready for the show, "Mr. Cina's Crazy Characters Comedy Show" to begin. The first character we met was Neal the Seal, who liked to do tricks, including a pie in the face for Mr. Cina.  Then we met Gary the Gorilla, who wanted to be a disco dancer.  Around 100 kids were sitting on the floor near the stage, and they just laughed and laughed throughout the show.  It was so much fun to see them enjoying themselves, and Grace really liked it when everyone laughed.

The next two characters were Hilda the Hippo, who really liked compliments and Phlegm the Monster, who had hygiene issues.  I think the kids laughed right up until the last minute, and we just loved being a part of it.  And Grace loved all the people who stopped by to say hi after the show.  She even got a smiley face balloon, which might have been one of her favorite parts.

The puppets were definitely the hit of the show!

As the show came to a close, the preschool board gave us more than $700 raised in donations and shirt sales.  We continue to keep the money together to take to Washington University this fall, and know that our community will make a difference in the fight against INAD.

Thank you SO much to everyone who made tonight such a success!

Thanks so much to everyone who came out to the puppet show tonight and those who helped to organize, set up, clean up and volunteer.  Our Grace definitely felt special tonight.

MLH