Wednesday, July 29, 2015

A Princess Pool Party

Just this morning, I placed an order for a very special life vest.  One of the other moms in our support group recommended this life vest for INAD kids.  Her son is six, and still uses his almost every day.

I was so excited when she posted it because Grace has really enjoyed swimming this summer.  And she definitely likes being independent, which is tough.  We have had some success with a raft, but I like the idea of her being able to be upright in the pool as well.

Princess Grace getting ready for her pool party.
When we first looked into the life vests, they were kind of pricey, but we knew we wanted to have one for  Grace. And we also knew it would last a long time.  The other family has been using theirs for three years. But thanks to the generosity of some local swimmers, we got it covered.

Grace and I had so much fun splashing in the Kiddie Pool.
One hot afternoon this summer after speech therapy, Grace and I ventured down to Central Park Pool.  I admit, I probably haven't been there since I was a swimmer in my youth, but it was fun to see how well they have kept it up. We swam in the water, and played on a raft, before hopping out to enjoy an Arctic Rush slushy.  Pool manager Amy Hacke came over to talk to me several times, and said Grace and I were welcome to come by anytime. 

Hanging out with Skylar in the Kiddie Pool.
Shortly thereafter, she sent me a message asking if they could host a pool party in Grace's honor to help buy her new life vest.  They know Grace likes to swim, and thought it would be a fun way to get the community involved.  So, we picked a Thursday night in July, and got the perfect night for a pool party.

Connor loved playing with Grace in the water.

Grace and I arrived with mom and dad, and enjoyed some pulled pork, made by Amy's husband, Kyle, and had a chance to watch many come to swim.  They had even reserved some chairs for us with a special Princess crown for Grace. She loved it.

The Jenkins family came to hang out too!
After dinner, Grace and I made our way to the Kiddie Pool to splash in the water.  Several of her friends from preschool came to swim, and they loved playing with her.  They would bring diving toys to her, and Grace and I would throw them into the water for her friends to find.  Grace just giggled and giggled every single time.

Pool Manager Amy Hacke talking to Grace.
Then we tried out her raft, and another preschool friend, very carefully pulled her around the Kiddie Pool, much to Grace's delight.  And I was delighted to watch her friends playing with her.

Lifeguard Ryan Robinson and Grace's friend Skylar play with her on her raft.
We went over to try the big pool, but Grace was getting pretty tired.  So, she and I snuggled some in the water, until it was too cold to keep going.  We dried off and shared an Arctic Rush "minion" slushy and some M&Ms candy.

Although we didn't make it until the end of the party, we enjoyed watching the kids swim and checking out the awesome silent auction items.  More than 100 people came to swim that night for Grace, and Amy brought me a check for $825 this week, which was more than enough to cover the life vest.  Hopefully, it will be in within a couple of week, and I can't wait to take Grace back down to the pool to show it off.

Hanging out with cousin Izzy and her dad, Phil at the party.
Thanks to everyone who came that night, and continues to join us on our Grace-filled journey.


Tuesday, July 28, 2015

I Have Fought The Good Fight, But My Race Is Not Done

The fourth annual Big Dawg Dare on Saturday, July 18, was the most successful one in the event's history. With more than 600 entries, the 5K obstacle run has grown from a little dachshund to a full blown Great Dane, with dozens of community programs reaping the benefits of the organizers hard work.

Volunteers from this year's Big Dawg Dare.
 But if all of this is true, why did I feel so lousy at Wolff Farms on Saturday.

The answer is because instead of completing the Big Dawg Dare, as I did the year before, I quit. About a mile and three-quarters into the race, just before the course goes into the timber, my body had enough.

For the four obstacles before I stopped, I found myself gasping for air and having to stop for two or three minutes before I was able to go on, only to stop again moments later.

I tried to will myself to go on, but having done it last year and knowing what was up ahead (possibly a hindrance), I opted to make the slow walk across the course to the finish line rather than continue.

I'm not entirely sure what was different this year, but it was probably a couple things. First, it was quite a bit hotter than last year and the weather may have took a little out of me.

Second, the course was tougher by all accounts. Last year, I was able to do all of the obstacles, although the hay bales gave me fits. This year, the two five-foot wooden triangles in the first mile were my kryptonite and there was no getting past them.

Organizer Brian Hollo gives Grace her very own Big Dawg Dare shirt.
 Third, and most importantly, I'm about 30 pounds heavier than when I ran last year. When we received my daughter Grace's INAD diagnosis in November, my beautiful wife Mary stopped eating.
Where she left off, I picked up and I haven't slowed down much since. I never considered myself a "stress eater" but I guess when the stress is that your three-year-old may not see her 11th birthday, it's a whole new kind of situation.

That's the hardest part about the whole thing for me. I could care less whether I finish first or last or whatever, but part of me felt like I let Grace down as I sat on the course gasping for air.
So many people have said that Grace has inspired them to run and to do other things that they thought were impossible, why the heck couldn't I do it?

Kendal Elvidge, a friend of mine, ran in a marathon earlier this year and had shirts made that said "I run for those who can't. Today I run for Grace."

He gave me one and I was wearing it on Saturday. The thought went through my head that I was not only not "running" for Grace, I had quit running and thus quit on her. The fact that part of the proceeds from the race were going to the INAD research study at Washington University in honor of my little girl made it even worse.

I sort of sleep walked through the next hour or so, telling people who congratulated me on finishing that they were wrong to do so. Everyone was super supportive, especially Mary, but I wasn't having any of it. I was a failure.

I posted something on Facebook about not finishing, mainly to stave off any questions on how the race went and received a lot more support from those telling me it was better to have run and lost than to have never run at all.

One of the comments that made the most impact came from Alexis Wernsing.

"From 40 years of God-given experience, trust me Kyle Herschelman when I tell you the very best lesson and example you will teach and be for Grace is to know and trust her limitations," her post said. "Give it your best every day, but stop when your body tells you. The entire community is honored to be a part of your family, without you finishing the Big Dawg Dare."

Alexis knows what she is talking about. She has overcome more adversity in her life than most people can ever dream of and her advice helped snap me out of my funk.

I now have a new outlook on the race and my performance. Yes, I stumbled, but I did not fail. I will get up and I will try again. And if I stumble again, which is entirely possible, I still did not fail. As long as there is a breath in my lungs, my race is not over.

Kyle after taking the water slide at this year's Big Dawg Dare.
Grace's race continues too. She has had countless setbacks, but not one has kept her from being the amazing little girl that she has become. She is my inspiration and if she can go on, so can I.

I'll see you at next year's Big Dawg Dare.

And Again I Say Rejoice

"Rejoice in the Lord always, and again I say rejoice."

Surely, she wasn't talking to me. I mean, doesn't she know all the things I have to deal with every day!

I felt the tears well up in my eyes as I sat through the Sunday service when Pastor Joy Caschetta talked about always rejoicing.

Grace was sitting, or rather slouching on my lap, and I tried to brush the tears from my eyes before they started to roll down my cheeks. I hadn't really wanted to go to church that morning, but I'd already set mom up to pick us up for Sunday School, so I rather begrudgingly walked out the front door.

As Pastor Joy went on to talk about the hardships Paul faced, and why it's so important to always rejoice, I sat in the pew, thinking about all the reasons that didn't apply to my life.

My whole world changed when Grace was diagnosed with INAD, and I would have to say there are few things harder than knowing your only child has a disease that will likely slowly kill her, knowing there's nothing you can do to help her, and having to watch it all unfold before your very eyes.

On top of that, we have to juggle taking Grace to speech therapy twice a week and physical therapy twice a week, once in Springfield, meaning every week I have to give up most of my only day off to do it.

Nope, Pastor Joy couldn't be talking to me.

But then she said it again.

"Rejoice in the Lord always, and again I say rejoice."

What could there possibly be to rejoice about?

My attitude hadn't really improved when Grace and I arrived home. In fact, I was starting to get a little irritated.

I started to cry, and Grace looked up at me from the bed and smiled, just as if to say everything's okay.

Those that know Grace, know she has a big, bright, beautiful smile, and is a very happy little girl most of the time.

Well, that was a start. If Grace was going to be happy despite her limitations and challenges, then I could find a way to be happy too, even if I didn't want to.

Sometimes, I catch myself in a pity party, feeling sorry for myself that no one could possibly understand what it's like to be faced with this type of uncertainty. But then I see Grace's smile, and I remember that nobody else gets the joy of being her mommy.

Yes, it's a hard job, every single day, probably the hardest thing I've ever done. And knowing there might come a time, she might not be able to offer her smile, is enough to make me want to give up.
But I won't.

I will get up every morning and put my feet on the floor. And I will find a way to rejoice, for all the gifts I've been given.

Kyle and I know that Grace is such a special gift, and her diagnosis gives us an even greater one. It gives us patience, understanding and the knowledge that we have to make the most of every single day we have with her, especially the good days.

That doesn't mean there still aren't hard days. But somehow God seems to find a way to remind me that I'm not alone.

There was the necklace that said "Believe in Miracles" that showed up on my desk one day at work.
There's a young girl so committed to raising funds for the INAD study that she made business cards for the bracelets she makes. Thanks, Kamryn. You have no idea how much that helped me this past week.

There are countless fundraisers throughout the community, helping us raise money for a study that might find a treatment for INAD.

There are friends and family who surround us with love and make sure that Grace has anything she could possibly need.

And there are so many reasons to rejoice and celebrate each and every day.

So, "rejoice in the Lord always, and again I say rejoice." I know I plan to.

Thursday, July 23, 2015

When You Wish Upon A Star

When you wish upon a star, your dreams come true!

That's always been one of my favorite Disney songs, so it was extra special that Angie Tefteller picked it as the theme of a July fundraiser to benefit INAD research.

Angie and her family have a metal sign business called DTA Metals, and I first did a story about them for the paper several years ago. Grace was a baby, and they cut a sign with her name using baby blocks.  It was just darling.

Check out the beautiful stars we made!
Fast forward a few years later, and Angie has been one of our biggest supporters for funding the research project.  She and her son Dalton, are even going to participate in the Grace-Filled 5K on Sept. 5.

Angie called me earlier this summer to tell me she had branched out with her business for home-based parties where participants could paint their own signs, and that it was turning out to be a lot of fun.  One of her favorite aspects was that it had become a "girls night out" of sorts for her too!

Grace supervises our work . . . 
She asked me if she could do a party as a fundraiser for Grace at Forsee Winery in Coffeen, as they had graciously agreed to let us use their facility.  I was thrilled.  What a fun way to raise money for a great cause!

I was even more excited when she released the theme, "Making a Wish Upon a Star to Cure INAD."  And everyone got to paint a metal star to take home.

Grace snuggling with Grandma Susie!
As it turns out, the fundraiser was the same night as one of my monthly assignments, the Litchfield School Board meeting, but Kyle offered to attend, so I could go to the fundraiser, and I really appreciated it.

I asked mom is she would come too, and we had a great "girls night out."  We got to the winery, and everything was set up and ready to go.  Mom and I are not always the most creative, so we stuck to patriotic red, white and blue, and really had a good time painting our stars.  It was fun to visit with others that night, and Grace was so patient the whole time.  I even painted a smiley face on her hand.

Grace really liked her smiley face!
While mom and I painted stars, Angie had a special butterfly that her assistant painted purple and green for Grace.  Dalton's favorite color is green, and he likes that Grace likes green too.  We can't wait to hang it up in her room.

We can't wait to hang Grace's new butterfly up in her room!
Although we might never have wished for this journey, so many in the community continue to make our dreams come true helping us to fundraise for research. We love you all!


Saturday, July 18, 2015

Rocky Mountain High

Although this blog is dedicated to our journey with Grace, every once in awhile, Grace's mommy and daddy need some time on their own.  And we are very blessed that both of our families live so close and are always willing to help us out.

Shortly after Grace was diagnosed, Kyle and I were doing some Christmas shopping, when I happened on a post by the Avett Brothers on Facebook. They were announcing three summer concert dates at Red Rocks Park, just outside Denver. My brother and his wife used to live in Colorado and have told us many times what a phenomenal venue it is to see a concert.  The clincher for Kyle was the opening act on Saturday, featuring another of his favorites, Sturgill Simpson.

Hanging out at Coors Field, watching the Rockies beat the Braves.
He was ready to go for it and pull the trigger, but I was a little nervous.  We had just gotten Grace's diagnosis, and I wasn't sure how she would be doing seven months down the road. But Kyle was very encouraging and said we could always cancel the trip when the time came if we didn't feel like we could leave Grace for that long.

So, we used our Christmas money to purchase the VIP experience tickets to one of our very favorite bands, the Avett Brothers.  I still wasn't sure we would actually go to the concert, but we were both still excited.

Rocking our Gracelets at Coors Field.
Several months ago, we started looking at airfare and hotels, making it all the more real.  Mom agreed to watch Grace for the weekend, and we were set.

We began looking at what else we could do in Denver while we were there.  One of our favorite things to do on trips is visit other Major League Baseball stadiums. We checked and the Rockies just happened to be in town that weekend, so we were planning to do that on Friday night. As a treat, my brother and his wife got us the baseball tickets for our birthdays in May!

Rocking our Gracelets at Red Rocks Park.
So, we had our plans, and our tickets, and all that was left was leaving for our trip.  We left bright and early on Friday morning, so we would have at least part of the day to explore Denver.  When we arrived at the airport, we managed to get through security in plenty of time to pick up a People magazine and some candy for the plane ride.  As we were sitting at our gate, they announced they had overbooked the flight and were in need of volunteers to take a bump. They were offering $300 in travel vouchers, so we went to check it out.  They could still get us into Denver late in the afternoon, and by the time they refunded our ticket price, we ended up with almost $900 in travel vouchers. So, we're saving it up for our next trip!

With the bump, we were rerouted for a short layover in Dallas, and still arrived in Denver around 5.  We picked up our rental car and headed into the city for the game.  Finding a parking spot in downtown Denver proved to be a little harrowing, and we were a little late to the game, but we had such a great time exploring the stadium.  And it was a perfect night to watch the Rockies beat the Braves.  We even discovered some of our new favorite ballpark Jumbotron games, like "player or primate" and "Finding Sasquatch."

Just hanging out with John Denver.
They were scheduled to have fireworks that night, but a storm rolled in, delaying the display.  We opted to stay dry and make our way to the hotel.  And after stopping at 7-11 for some hotel room snacks, we checked into our hotel.

It had been a long, but very nice first vacation day.  And we started to discuss what we wanted to do the following day before the concert.  We talked about the Denver Art Museum and some other famous sights.   But neither of us wanted to fight the city traffic again. instead, we opted to spend part of the day in, and take a break from all the running.

We wore our Grace Filled Journey shirts to the concert, and were about five rows from the stage.
We slept in, ordered room service for breakfast and relaxed in the hot tub before making our way to Red Rocks Park.  Since we arrived several hours before the concert, we had a chance to walk around and look at the natural beauty in Red Rocks Park. We also wandered around the Colorado Music Hall of Fame and had lunch in the park.

Since we purchased the VIP tickets, we got our tickets in the afternoon and early admission into the concert.  They had a pre-party with a variety of food, and a chance to talk with other fans.  We weren't the only ones who traveled for the show, as we sat with people from Oregon, Pennsylvania and Georgia among others.  The tickets also included a special section of seats, starting about five rows back from the stage.  So, we enjoyed a little bit of food, and then made our way to some awesome seats for the show.

Rainbow over Red Rocks during Sturgill's set.
Sturgill Simpson, who Kyle had seen before, opened the show with a  great set.  About part way through his set, a beautiful double rainbow just appeared over the sky, almost like it was meant to be that we were there.  Kyle and I were pretty proud to be wearing our Grace Filled Journey shirts to the show as well.

As we were visiting with some of the fans around us, one couple pointed out the parents of Scott and Seth Avett, who were greeting fans off to one of the sides.  Kyle told me I should go over there, but I was so nervous.  So, we went together.  Kyle introduced himself, and they were delighted to talk with us.  They were so kind and allowed us to share our Grace with them.  Before we left, Mr. Avett told Kyle, "you don't always like the cards, but you play the hand you're dealt."  And we wouldn't trade our Grace card for anything.

Just hanging out with Mr. and Mrs. Avett.  It was one of the highlights of the show for us.
As the band took the stage, it marked the fifth time we had seen them. We saw them twice before in St. Louis, once in Peoria and one other time for our anniversary in Wisconsin, the only other weekend we've ever been away from Grace.

And the show definitely didn't disappoint. They played some of our favorites, like "Kick Drum" and "Murder in the City," as well as some other songs that just might make our new favorites list.  In all three nights at Red Rocks, the band never played any repeat songs. Many fans made sure to get tickets for all three nights, something we think would be fun someday.

We found ourselves up dancing and singing nearly the whole evening, just enjoying our time together.  While we love the opportunity to take Grace with us for family events, every once in awhile, it's nice to have some time to ourselves, where for just a short while, we can put the worries of the world up on a shelf, and remember how it was that we fell in love in the first place.

The Avett Brothers will always be one of our very favorite bands.
Our flight home left bright and early on Sunday morning, bringing us back to the reality of our journey.  Neither of us could wait to see that big, bright beautiful smile waiting for us when we got home. We even took that Sunday night off work so we could spend some extra time with our sweet Grace. With a little bit of swimming, we enjoyed our evening back together. 

Although our weekend away was wonderful, there truly is no place like home, back with the snuggles of our favorite little girl. And as the Avett Brothers sang that night, "Always remember there is nothing worth sharing like the love that lets us share our name."


Wednesday, July 8, 2015

Happy Birthday, America!

Happy Birthday, America!

When we started this blog, we wanted to share our journey with others, because despite its challenges, we think it's a pretty great ride!

On Saturday, the three of us shared an awesome day celebrating the 4th of July together. From start to finish, it was a spectacular way to say, "Happy Birthday, America."

Happy Birthday, America!
Unlike lots of people, Kyle and I didn't get the day off from work, as there were 4th of July events that needed to be covered. But we've learned along the way, just to make the most of our opportunities and enjoy the time that we have together. We have some really unique date nights over the years covering things for the paper.  At one of our last ones, Kyle even went to a Litchfield School Board meeting with me!

So, bright and early Saturday morning, Kyle got up to help with the annual biathlon for the Hillsboro Chamber of Commerce, and cover it for the paper while he was there. Grace and I opted for sleeping in!

But we were up and dressed when he got home, ready for our next adventure together, the inaugural cardboard boat regatta. This one was my assignment, and we had a good time at the beach too.  As I watched other kids playing in the sand on the beach, I worried that Grace wouldn't have any fun just sitting in her stroller. But Kyle was holding her, and he said she loved watching all the people and talking with everyone. Sometimes I need to remember that even if things don't go the way I plan them, they still go great!

After the very successful cardboard boat regatta, it was home for some lunch and a nap. We got all rested up to go back out to the lake for the evening music and fireworks. It was also the culmination of the Queens on a Mission for Grace raffle, and Grace got to draw the winning tickets. 

Grace got to draw the winning raffle tickets!
Those five beautiful queens raised over $2,000 selling raffle tickets for an American Girl doll, St. Louis Cardinals tickets, and some gift cards. As we walked up to their booth, all the girls were so excited to see Grace. One of them pulled me aside and said that anytime someone gave them money but didn't put their name on a ticket, they wrote Grace's name on it. I think all the girls really hoped that Grace would win the American Girl doll, and it just worked out that way. We are so blessed to have such a generous and caring community.

And she even won the American Girl doll, Grace! These queens are awesome!
After our official duties were done, we enjoyed some dinner, delicious shish-ka-bobs as a fundraiser for the Balin Robbins foundation, and sat back to enjoy the musical stylings of the Funky Butt Brass Band. Grace and I even got to share a dance to "Devil Went Down to Georgia," and we both loved every minute.

Sharing smiles while we dance.
Before heading home, we snuggled up under a blanket to watch the awesome fireworks display, and I think Grace really enjoyed watching the bright colors.

Snuggling and watching fireworks.
As we headed for home, we talked about what a great celebration it had been of freedom, fun and most importantly, family.


Saturday, July 4, 2015


There aren’t a whole lot of “firsts” for me anymore. First (and hopefully only) wedding? Done. First child? Done. First 5K? Surprisingly done as well. But on Saturday, June 20, I got to experience a first that has absolutely made my month. On that day, I became an uncle for the first time as my sister Mikaela and her husband Scott welcomed Quincy Gracen Tabaka to the family.

Baby snuggles with Quincy Gracen
I’ve never really been a big baby guy, but this was somehow different. I couldn’t wait to meet the little guy and after two grueling weeks, I finally did as we made the trip to Arnold, MO yesterday. After just a couple hours, I’m pretty sure I have this uncle thing down.

Aunt Mikaela with Grace and Uncle Kyle with Quincy
Granted he slept most of the time, but I didn’t drop Q on his head and he didn’t cry when I held him, so I’d say it was a successful experience. By far the coolest thing about the trip was watching Grace and Quincy together. Not that either one seemed that excited about the interaction, but it was still awesome to see the next generation together.

Photobomb by Uncle Scott
Hopefully I can be as good of an uncle to Quincy as Mikaela has been an aunt to Grace. They have always had special relationship and it is awesome watching them interact. One of the first things Mikaela said when we told her we were coming down was that she foresaw a new screen saver in her future, featuring Quincy and Grace of course. The connection between the two of them is even evident in my new little buddy, whose middle name is in honor of his big cousin.

Sweet cousins
I can’t wait to spend more time with Q and to see him and Grace interact and do things together in the future. What makes it even better is that I’m going to get to do the whole thing again in a few weeks, when my sister-in-law Monica and brother Daniel welcome their little guy to the world. Firsts are awesome, but I’m sure seconds will be a heck of a lot of fun too.

Sweet Quincy

Friday, July 3, 2015

My Hero Goes By Grace

Several months ago, some of the organizers of this year's Raymond Independence Day celebration asked us if they could host this year's 5K event for Grace and another little boy named Cooper.  Each year, they sponsor the event, which also include a one-mile run, a half-mile run and a five-mile bike ride, in honor of a family with some kind of medical needs.

SuperGrace and her family!
We were so honored that they picked Grace for this year's event on Saturday, June 27.  The theme of this year's celebration was "Everyday Heroes," and participants were encouraged to dress up as their favorite everyday heroes.

After it was announced that the race would benefit Grace and Cooper, several members of the Lincolnwood High School class of 1999, which is Kyle's graduating class, decided they were going to do the run together.

Grace and her fans from the Armour family
Just a few weeks ago, one of those alumni, Megan Beeler, texted me a picture of some special shirts they ordered and asked if we would like some.  And of course we said, yes! On the front of the shirts, it had a Superman logo with a big G in the middle, and on the back they said, "My Hero Goes By Grace." Except that Grace's shirt, just says "Grace" on the back.  How cute is that!

SuperGrace and her SuperFans
On the morning of the event, we had to get up extra early.  The race started at 7:30 in the morning to beat the heat, and that's a little earlier than this Herschelman clan usually gets up.  But somehow or other, we managed to get there before the race started.

It was really neat to see Kyle's classmates in their SuperGrace shirts.  There were also several of his family members wearing their "Grace-Filled Journey" shirts.  I'm getting close to having enough Grace shirts to wear one every day of the week, and I love it!  It seems like mine are always in the wash.

Cooper and his brother Carter crossing the finish line dressed as firefighters.
We got Grace set up in her stroller, and the three of us walked with Kyle's mom, his aunt Angie and cousin Katelyn for most of the course.  We ended up taking a modified 5K route, since Grace was getting a little tired of sitting, but it gave us the chance to cheer on some of the participants as they crossed the finish line.

Our family with Cooper and his family.
Grace and Cooper!
About 150 people participated in the race, and they raised more than $2,500 in the fundraiser. Funds were split equally between Grace and Cooper's family. They even presented us with a BIG check on stage later that evening.

The BIG check!
One of my favorite parts of the race was after Cooper's family got done, and they brought Cooper over to talk to Grace. The two just smiled at each other, not having any idea what an inspiration they have both become to so many.  Another inspiration came after the race when one of our dear friends, Alexis Wersning, came over to the race wearing her "Grace Filled Journey" shirt. We had a good time visiting with her, and Grace even posed in an Illini hat, just for Alexis.

Grace and one of her biggest fans, Alexis Wernsing!
And while my hero does go by Grace, my heroes are also all the people that participated in the race or helped in any way to make it such a special day for our family. Each and every one of you is an everyday hero in our book!