Friday, June 24, 2016

A St. Louis Getaway

Even before Grace was diagnosed with INAD, Kyle and I wanted Grace to have as many awesome life experiences as possible. Some were simple things, like a trip to the pumpkin patch or the zoo. Others were things we did in our childhood that we really enjoyed.  I think both of us have really great memories of attending St. Louis Cardinals baseball games, and Grace has gotten to go each summer.

But, this year, she got a special treat. One of the Lincolnwood volleyball families, the Gerlachs, called Kyle this spring to tell him about a trip to the ballpark. They had been telling Angie's brother about Grace, and he asked if she liked the Cardinals. His company, Republic Services in St. Louis, wanted to offer us some tickets to a ballgame. We were thrilled.

Fredbird brought Grace a new Cardinals bear.
Angie asked Kyle if Sunday, June 19 would work for us.  Usually, Sundays are a hard day for us to plan something like that because of work, but this time, because of the family trip to Branson, we had already taken that day off. It seemed like it was meant to be.

All smiles for Fredbird!
She loved when Fredbird gave her a kiss!
Later that week, Kyle got an e-mail about the game. They were providing us four tickets in an accessible area of the ballpark so we could take Grace's stroller in with us.They also arranged a special visit with Fredbird just for Grace, as well as a hotel room that night at the River City Casino and Hotel. Talk about feeling spoiled!

The day of the game arrived, and despite our best laid plans we still ended up a bit late to the ballpark. Kyle was a little disappointed not to get the bright blue Cardinals socks that were the giveaway that day, but it was okay. We made our way through the gates and to our seats, and I was a little worried about the sun and the heat. When we got there, our seats were in the sun, but it didn't take long for the shade to overtake our area along the third base line, which was a great place to watch the game.

All smiles with mommy!!
Since we had gotten four tickets, we invited Kyle's brother, Shane, to go with us. He arrived shortly after we did, and it was fun to watch the game together. About mid-way through the game, one of the Cards employees came over and asked me about Grace. He said Fredbird would be coming to visit her soon. And it was definitely the highlight of the game for us. Although it took Grace a few minutes to warm up to him, Fredbird never gave up trying to get her to smile. He even brought her a Cardinals bear from the Build-A-Bear store and signed her stuffed Fredbird. We got some awesome photos, and I think Grace really enjoyed it.

Our special package also included a gift card for food in the ballpark, and Shane and I headed out to find some.  We even got some Dippin' Dots ice cream for Grace, which was also a big hit. I picked out the kind that came in the mini Cards helmet, so we can play with it at bathtime. 

Being silly with Uncle Shane and Daddy.
All too soon, the game was over, and even though the Cards lost, we had a wonderful afternoon. We said our goodbyes to Shane, and headed for the River City Casino and Hotel.  Neither Kyle or I had been there before, but it was really easy to find, and not very far from the ballpark.

Check out our great view for the game!
We arrived at registration, and everyone was so friendly and helpful. But the real treat started when we got to our room on the seventh floor. Hotel staff had written a beautiful card for Grace and left a HUGE basket of Cardinals goodies and souvenirs for us. I laid Grace on the bed next to it, and she just grinned, somehow knowing it was just for her. The basket included a new tiger stuffed animal with a tiara, a St. Louis Cardinals beanie baby, a blanket, apparel, cups and even fuzzy bunny slippers!  We felt so spoiled!

The pampered princess enjoying her hotel room.
As we started to put some of Grace's drinks in the refrigerator, we found a tray of cookies and three bottles of milk (vanilla, strawberry and chocolate) just waiting for us. I set Grace on my lap, and she drank a whole glass of chocolate milk and ate half of one of the cookies, which were delicious!

Sweet snuggles with Gracie Lou!
Kyle came out of the bathroom to tell me there was a TV in the mirror. He also discovered a button that opened and closed the room's curtains, as well as a digital "do not disturb" thing in the door. Needless to say, we were quite impressed by the amenities in the room, as well as the kindness and caring of the staff.

After we cooled off from the ballgame, we took Grace down to walk around the hotel, which kind of resembled one of the casinos in Las Vegas. We decided to order pizza in the room and just relax that night together, and it was amazing.

The next morning, we were trying to decide what to do, and Kyle looked up taking a tour of Busch Stadium. With the great experience we had the day before, we thought it might be fun to get a behind-the-scenes tour, and it was!  The tour included a stop in the dugout, Cardinals Club, Redbird Club and the Champions Room, where we got to see four of their World Series trophies.

Hanging out in the Cards dugout!!!
After the hour-long tour, we bought a really cool photo package and headed to Ballpark VIllage for lunch. Our tour tickets also included a stop at the Cardinals Hall of Fame, which Kyle had been wanting to do anyways. So, we ate a quick bite and headed that way.  It was neat to read the history of the Cardinals and the three ballparks, as well as see so much memorabilia from our favorite team.

Kyle and Grace in the Champions Club.
One of the highlights of the museum stop was when one of the volunteers asked if Grace wanted to hold a Cardinals bat. You could pick from several Cardinals, and actually hold a bat they used when they played. We picked Stan Musial, and with plastic gloves on, I helped Grace to hold it. The volunteer showed us several nails where Mr. Musial had fixed the bat when it broke. She also had the chance to try on two World Series rings, which was awesome. The Cards won the World Series in 2011, just weeks after she was born, and we can remember watching those games together. It was neat for her to have a chance to try on the ring from that series.

Grace stepped up to the plate to hold Stan Musial's bat!
She also got to try on a World Series ring from 2011!
Before heading out, we stopped to see a small section, dedicated to the soccer games that have been played at Busch Stadium, which was also really neat. All in all, the museum was really well done with interactive exhibits as well as lots of information about the history of the Cardinals and Busch Stadium. And we hope to go back someday soon.

One last stop by the Arkansas Travelers display!!
Then it was time for vacation to be over and to head back to Hillsboro. We loaded up the van, and prepared to go home. Although it was a quick trip, it's one that we will always remember, as an awesome chance to make more memories on this Grace-Filled Journey.


Armour Family Reunion

For the past year and a half, Kyle's family has been planning a very special reunion this June in Branson to celebrate his Grandma Virginia's 80th birthday, which was in March.  Nearly 50 Armours descended on Branson over the weekend to be part of the family reunion.

Hanging out with Grandma Virginia and Aunt Karen.
We took off on Thursday morning, and made our way to Branson with Grace. It was kind of nice to be able to take our time and not rush to get there.  We set Grace up with Mary Poppins and Bedknobs and Broomsticks on her DVD player, and headed west, stopping for lunch in Rolla. We had a bit of a late lunch at Buffalo Wild Wings, so I really thought Grace would sleep for part of the remainder of the drive, but she waited until ten minutes before we got to the cabins to fall asleep.

Papa Randy and his grandchildren.
When we arrived at the cabins, we spent the evening hanging out with Kyle's brother, Daniel, his wife, Monica, and our nephew Keelen.  The boys were excited to watch the US men's soccer game on TV, and we just enjoyed a nice, relaxing evening together. Grandma Virginia and Kyle's Aunt Karen stopped by for a quick visit too.

Pool time with Uncle Shane, Daddy, Uncle Daniel and Uncle Scott.
On Friday morning, we had to wait for Grace to wake up around 10 a.m. I think her ten-minute nap caught up with her. So, we enjoyed watching some Eurocup soccer and just having a few moments to ourselves.  When Grace finally did wake up and have breakfast, we headed to Kyle's mom and dad's cabin for lunch and then some swimming. The kids all really loved the pool, and Grace stayed in the water for a couple of hours. She really seemed to like all the attention. When she started to get tired, she and Grandma Kim got out of the pool, and Grace was asleep almost immediately in her lap.

Swimming with Grandma Kim and Aunt Karen.
That night was a cookout with the entire Armour clan. Despite some very hot weather, we enjoyed great food and even better company. I had promised Kyle's mom I would take some photos on the trip, so I wandered around taking photos of all the cousins, while Kyle and Grace hung around the picnic tables. Since it was so hot, we took Grace back to the room a little early, and after we got her cooled off, we headed back to Grandma Kim's room for cupcakes to celebrate Quincy's first birthday. Grace enjoyed snuggling with Kayley and Kensey, and getting everyone's undivided attention.

Grace loved talking to Aunt Karen and Aunt Kristy at the cookout.
Although she protested leaving, she had a good night's sleep, so she would be all ready to go to Silver Dollar City on Saturday. It turned out to be another hot day, but it was fun to be together.

We got to celebrate Quincy's first birthday!
After arriving in the park, we split from our big group with Kyle's family and took Grace and Quincy to the kids' rides area. Quincy wasn't big enough to ride the teacups, so Mikaela and I took Grace for a ride, and she seemed to like it.  Quincy got to ride the Firepup ride with his dad, and we all rode the fire truck ride together. I think the boys were a little nervous, but everyone did great.

Just goofing around at Silver Dollar City.
We ate lunch at the Tater Patch, which is a Herschelman favorite at Silver Dollar City. Grace even go to try the potatoes, and enjoyed them. When we finished eating, we made a trip to the first aid office to feed Grace in a nice, cool place. She did great, so we headed back out again to walk around Silver Dollar City. 

Riding the tea cups with Aunt Mikaela!
Riding the fire wagon ride.
As the temperatures began to rise, and naptime drew nearer, we headed back for the cabins shortly after lunch.  I thought Grace might take an afternoon nap, but she was content just to lay by me on the futon. She babbled and smiled the whole time, until it was time to get ready for dinner. We heard a knock at the door, and Grandma Kim had a special surprise for Grace. She had purchased a purple princess parasol at Silver Dollar City, and had Grace's name put on it. Grace absolutely loved it. We can't wait to try it out when we go swimming next time!

Grace loves her new purple parasol from Grandma Kim!
Once we were changed and ready for dinner, we headed to Kyle's mom and dad's cabin, where Grace promptly fell asleep on Uncle Shane's lap, mere minutes before it was time to leave for the restaurant.  It was cute, and I don't think Uncle Shane minded a bit.

The Armour Family Reunion 2016
Saturday night was another big Armour family dinner, and we decided since nearly everyone was together that we would take a group photo, and that was one of my jobs. Even with almost 50 people, we managed to make it work, and it turned out pretty good.  We did some individual family photos as well, and I think everyone was pleased with how well they turned out.

The Herschleman family.
The restaurant did a great job of seating all of us, and we all enjoyed the food and the time to visit. They even sang Happy Birthday to Grandma Virginia as part of the festivities. And after dinner, we enjoyed some more time visiting with Kyle's family before bedtime.

Family photo op with our favorite princess!
Kyle, Grace and I were given some awesome Cardinals tickets for a Sunday afternoon game, so we had to depart Branson pretty early that morning, but not before we did a few more photos and said our goodbyes. It's not all that often we get together with just Kyle's entire family, and it was fun to be together.

Just the boys!
Grandma Kim and Grandpa Randy with their grandkids.
Even though it was a quick, weekend trip, we made memories that we will never forget (and I have the photos to prove it!) I'm so glad that we had the chance to go, and the Grace got to spend so much time with Kyle's family. It was a special weekend on this Grace-Filled Journey!


Wednesday, June 15, 2016

Movie Night Under The Stars

As Grace and I sat out under the stars, I just couldn't help but think how lucky we were to live in such a wonderful community.

Earlier this spring, Jeanne Banovic, who is the president of the Litchfield Rotary Club, told me her organization was planning a free family movie night at Sky View Drive-In, and they wanted to help raise funds for INAD awareness. I told her yes, and that we were so excited to be a part of such a fun event. We had also been hoping to take Grace to the drive-in sometime this summer, so it seemed meant to be.

Grandma Kim and Grace got tickets for the carnival games.
In making plans, they set the movie night for Sunday, June 12, in hopes that many families would be able to come that night.  It didn't work as well for our family, since Sunday is a paper night.  But even though all of us didn't get to go, Grace and I still had a really great time!

I went into work early that afternoon so I could get done in time, and Kyle's mom met me at the drive-in with Grace. They were already there when I got there, watching the kids play some of the carnival-type games manned by the Rotary Club members. There was a bubble station and a ring toss game, and lots and lots of prizes.  The kids really seemed to be enjoying themselves.

Cousin Izzy won two fans and gave one to Grace!
The Litchfield Rotary Club also collected donations as people arrived and had a 50/50 drawing. They split the proceeds between INAD research and the Montgomery County Cancer Association, another awesome community organization.

When we got there, my aunt and uncle were already there with one of my cousins and his family. Izzy, who is just a year younger than Grace, was enjoying playing the games. She even won a fan for Grace, and was so excited to give it to her. Grace enjoyed checking out the bubble station, and visiting with everyone that was there. One family even came over and all three kids asked if they could meet Grace. They were so sweet as they came over to say hi.

Hanging out with the McLaughlins to watch Minions.
Then, it was time for the movie to start. Grandma Kim headed for home, and Grace and I found a perfect spot next to Uncle Ralph's truck. She got some free popcorn from the Rotary, so we settled in to watch Minions. Grace sat on my lap, and we just enjoyed snuggling under the stars.

I had never seen Minions before, and it's a cute movie, even though Grace didn't make it through until the end. But as we snuggled, I couldn't help but think how lucky we are to live in a place that cares so much about our beautiful Grace.  We were honored to be part of such a special night, and can't wait to go back to the drive-in and sit under the stars together.


Monday, June 13, 2016

Making Moments Count At The Grace Cup

A simple question, but the more I think about what the Channel 20 reporter asked me on Saturday at the Grace Cup, the more complicated the answer gets.
These are the awesome kids who played in this year's Grace Cup.

The short answer is I like soccer and the kids in our area didn't really have a soccer all-star game to call their own, like basketball, baseball and football do.
When I came up with the idea, it was equal parts to raise awareness for the sport and its players in our area and to raise awareness for INAD (infantile neuroaxonal dystrophy).
Grace loved hanging out with family during the Grace Cup. And she got her own pink shirt!
Ever since my four-year-old daughter Grace was diagnosed with INAD in 2014, my beautiful wife Mary and I have been working to bring awareness and research monies to this genetic monster that may one day take our little girl.
This is where the answer gets complicated. I don't have an athletic bone in my body, but for some reason I was certain that Grace was going to be starting for the United States Women's National Team at the 2031 World Cup.
Our buddy, James Ryan, captured all the action of the game for us.
Grace and I used to watch Premier League soccer together while mommy caught up on some much needed sleep on Saturday mornings. We listened to the Men in Blazers podcast during bath time. And we played soccer, with me chasing my little towheaded future Megan Rapinoe around the living room as she dribbled a soccer ball while clutching on to the ottoman in the center of the room.
It was fun to see so much family at the game!
At that point, about a year and a half or so, Grace couldn't walk independently, but we weren't that worried. It took me a while to walk, too. Sometimes I still struggle with it.
Action photos from the game!
She was young and undoubtably would take off on her own at any time. But she didn't. And now we know why.
Grace can't walk now, even with the help of the ottoman. In fact, her legs won't support her at all and the 2031 World Cup dream has been replaced by hopes for a cure or a treatment or any kind of miracle.
Kyle and Grace got interviewed for the Channel 20 news!
For me, the Grace Cup is kind of a way for Grace to vicariously play the game that connects she and I.
When the 27 players from 12 different central Illinois schools took the field on Saturday, it was like she was out there too.
More action photos!
It was a great day for soccer!
In reality, she doesn't care. She was way too busy being loved on by various members of my family than to be bothered with watching the game, but it still feels important to me.
It's also a way for me to get across the point of this whole "Grace Filled Journey" to a group that is nearly impossible to reach sometimes... teenage boys.
Smiles for Aunt Mikaela!
Grace enjoyed some time with her cousins too.
At 17 or 18, most teenagers feel invincible, like they have their whole lives ahead of them and nothing can change that.
I know different. I know that Grace may never see her teenage years and how precious every second of every day is.
Ultimately, I hope everyone had fun at this year's game, but more importantly I hope that they take an example from Grace and make every moment count.
Kyle thanked all the players for coming and reminded them to make every moment count.
That's why we'll do this again next year, despite me being a giant ball of stress in the lead up of the first two Grace Cups (thank you to Mary and Travis  for nursing me through it).

Fortunately, I learned the same lesson that I'm trying to convey to the kids: that life is too short to not do things.

Wednesday, June 1, 2016

Make The Places You Go Count Every Day

As we turned the calendar over to May, I had already picked a book for this month's column, Dr. Seuss's "Oh, the Places You'll Go!" Believe it or not, this is not one of the hundreds of titles that has found a spot on Grace's bookshelf, and it's not even one I've ever read to her. 

Facing a terminal illness, it seems odd to talk about her future, or even dare to dream that she will have one beyond INAD. But as I read through the book, I found that I learned a few lessons myself about the places that all of us can go.

"You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose."

May is a month of celebrations as many students are marking new milestones. Whether it is graduation from high school or college or even just moving up to a new school building, students stand at a crossroads, a chance to make a new start.

"You're on your own. And you know what you know. And YOU are the guy who'll decide where to go."

I read those sentences several times, getting stuck on only the second page of the book. Sometimes I feel like the circumstances of my life dictate all of my decisions.  I can't do anything to change Grace's diagnosis, and I find myself feeling like I am powerless to make any decisions that will affect my life in a positive manner. No matter what decision I make, Grace will still have INAD.

While that may be true, I can make decisions every day that affect my life in a positive or a negative way. It's true, I have NO power whatsoever to change the fact that Grace has INAD. But I can make choices to keep a positive outlook, to give Grace the most opportunities that life has to offer and to raise funding and awareness about INAD, so that someday, other families might not have to face this battle. After all, if Grace can keep a beautiful smile on her face, then so can I.

 Dr. Seuss goes on to describe the forks in the road and choosing not to go down "any not-so-good streets."

"And you may not find any you'll want to go down. In that case, of course, you'll head straight out of town."

Many of our high school students will be heading out of town for the first time in their lives, to live in a place they've never known. I went to school three hours from home with a population of 22,000 undergraduate students, nearly the size of Montgomery County, just at the school!  It was overwhelming, and I got lost more than once my first week in Columbia, MO. But eventually, I found a group of friends, who helped me in my journey.

"Out there things can happen and frequently do to people as brainy and footsy as you. And when things start to happen, don't worry. Don't stew. Just go right along. You'll start happening too."
That can be a tough one for me.  I often expect things in life to work out just like I planned. High school - check. College degree - check. Career - check .Husband - check. Baby - check. You think you have all the things that make up the recipe for happiness, only to find life throws you a curve ball, like an incurable illness. 

One year in a Christmas card, a friend sent me a bookmark (that I use all the time), that read "Life doesn't have to be perfect to be wonderful." And that's something I try to remember. Life may not turn out anything like we imagined, but each of us has the chance to choose the path to happiness. It just might be different that your mental picture.

"I'm sorry to say so but, sadly, it's true that Bang-ups and Hang-ups can happen to you. You can get all hung up in a prickle-ly perch. And your gang will fly on. You'll be left in a Lurch."

All of us find ourselves in lurches of different shapes and sizes at some time in our lives. It's what you do in that lurch that matters. "Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?"

The next few pages of the book describe someplace I often find myself, even though not intentionally - the Waiting Place. On these pages, all the characters are waiting for a bus or a train, for their hair to grow, for a pot to boil or even for a better break. But do your best to make an escape from that place. Don't find yourself waiting for life to be perfect. Take a step out in faith and see what life has to offer.  If you wait around for things to be perfect before you find your happiness, you'll miss out on so many great things along the journey.

"On and on you will hike. And I know you'll hike far and face up to your problems whatever they are."

No matter if life is taking you somewhere hundreds of miles from home in Montgomery County or not, remember that there's not any problem you can't face. Some are bigger than others. Some may take you to places you've never been, or places you hoped never to go. But one thing that will never change is the chance you have to make the right choice, and head down the path to a bright future.

I tell people that Grace's disease has given me both one of life's greatest gifts and biggest challenges all in the same package, the opportunity to remember the importance of living in each day. Not a single one of us is promised a tomorrow. Genetics says that Grace may have less of a chance to be a teenager than some. So, while it's hard not to envision her going to Prom or driving a car, or even walking across that stage at graduation, I see her smile at me every morning when she wakes up, and I know it's going to be a great day.

Remember to dream big, but also remember how important it is to make each and every day of your journey count. Smile at others, be kind, do the right thing, even if you think no one is watching. And above all, find the way to choose happiness. Because no matter where your journey takes you, you'll be glad that you did.