Follow Dory's Lead And Just Keep Swimming

On one of our days off this summer, Kyle and I walked Grace uptown to see the latest Disney movie, "Finding Dory."

I can't say that Grace got a whole lot out of it, but she loves being with us, and we try to do as many regular things with her as we can. Kyle was a little worried we would be lost since neither of us had ever seen "Finding Nemo," but we managed to keep up with the storyline.

Soon after, Grace ended up with a small stuffed Dory, as a reminder of the fun day that we had at the movies. And then, my mom and dad brought her a new book from one of their trips about Dory, called "Three Little Words," written by Amy Novesky.

The cover of the book features a photo of Dory and Nemo, as well as Nemo's dad, Marlin, on their journey to find Dory's parents.

As the story begins, Dory is off on a new adventure, and the author reminds her "Wherever you go, whatever you do, don't forget these three little words . . . "
Just keep swimming.

That's kind of become a motto in our house. No matter what the day brings, good or bad, you have to find a way to keep swimming.

There are days the journey is hard, and I don't want to keep swimming. But instead of giving up, I look to Grace, who is the very picture of the phrase, "just keep swimming." It doesn't seem to matter what life throws at her, she always has a smile for everyone she meets. She never gives up in physical therapy, even when it's hard.

Grace always finds a way to "just keep swimming," and that's become a huge inspiration to me.
Some people may know that Grace is going to be a big sister in the coming year, and that's definitely a roller coaster of a ride for her mom and dad.

After she was diagnosed with INAD, we knew the odds of having another child on our own weren't necessarily in our favor. If I were to get pregnant, there would be a 25 percent chance that child would have INAD just like Grace.

And those aren't odds we were willing to face. Instead, we looked to technology and in vitro fertilization, where we had the chance to have the embryo tested ahead of time.

I'll admit I knew very little about IVF before we started this journey, but it sounded easy enough. Boy, was I wrong. It's by far the hardest thing I have ever done, and at the end of the day, there's still no guarantees that you'll end up pregnant.

But taking a page from Grace's book, we "just kept swimming." When our first try didn't work, we regrouped, and decided to try again.

This time it was successful, although it's been a bumpy journey so far with several months left to go. In the end, though, we know it will all be worth it.

Dory's book talks about remembering to "just keep swimming" when you're alone, when you don't know where you're headed or when you're scared. Because in the end "You'll soon discover . . . that dreams come true."

None of us are promised an easy journey. We all face different struggles, but what makes us strong is remembering to always "just keep swimming."

Minor Leagues And Major Awareness

Our living room looks like a sporting good store, or maybe a memorabilia shop. There are a couple softballs, two basketballs, two volleyballs, a Purdue-Calumet softball helmet, more baseballs than you can count and even a putter. And all of these are Grace's, courtesy of the teams that have generously made time to recognize our little girl and to raise awareness for Infantile Neuroaxonal Dystrophy.

On Saturday, July 23, Grace added to her collection in what was the biggest, numbers-wise, INAD awareness event that we have participated in. In front of a crowd of more than 5,000 people, Grace threw out the first pitch, with a little help from me, at the Arkansas Travelers minor league baseball game and made that many more people aware of what our family has been battling.

Dinner at The Fishin' Pig in Poplar Bluff.

The whole experience started a few months ago, when Traveler's general manager Paul Allen talked to me about doing an INAD awareness night this year in Little Rock. Paul and I were roommates and interns for the Traveler's in 2005 and have kept in touch in the 11 years since our time at the Travs' former home, Ray Winder Field, which is now Ray Winder Parking Lot. He's a great guy and has a son just a year or so younger than Grace Lou.

After we decided on a date, Paul gave us some information on what they do for other groups. Not really knowing what we were doing, Mary and I kind of treated this year as a test run. We did up a video that ran a few times during the game and I did a radio interview with Pete Blais, one of the Traveler's broadcasters in advance. We may do a few things differently next year, but overall, everything turned out awesome.

Family photo before the Travelers game.

We left home on Friday and picked up my sister Mikaela and my nephew Quincy, who were riding down for the game with Mary, Grace and I. My mom and dad and my brother Shane were also coming down later that night. We got a little bit of a late start, but were on the road by mid-afternoon. Around six, we were nearing Poplar Bluff and getting hungry and ready for a break, so Mary scouted out some places to eat. That search ended when she mentioned a place called the Fishin' Pig. You see a place called the Fishin' Pig and you have to stop, or at least I do.

Cheesing with Quincy and Mikaela before the game.

After convincing the girls to agree with my dinner choice (which was really, really good), we had a nice meal, with Shane catching up to us as well. The rest of the trip to Arkansas seemed to last forever, partly because we drove an hour on a two-lane highway with two cars going 50 miles an hour ahead of us. Eventually we made it to Little Rock and checked into our hotel. Grace went to bed pretty quick, but Quincy thought that the three-hour nap in the car was plenty for the night and didn't go back to bed until after 1 a.m.

Kyle and Gracie Lou on the big screen!

We caught up with my parents and everybody the next morning and made plans to have lunch together. Continuing with our fish/pig restaurant trend, we hit a restaurant called the Flying Fish that was right next to our hotel. The food was great and the atmosphere was really cool. There were pictures of fishermen and their catch on one wall and more fake talking bass plaques than a lifetime of Dollar Generals could hold on the other. That afternoon we went swimming in what may have been the coldest indoor pool ever, but we had a blast. Quincy even said "Kyle" a couple times, or close enough to it for me.

Travs pitcher Keynan Middleton caught Kyle and Grace's first pitch.

I would have a brief panic attack after that as it started to rain, but we looked at the weather and it said that it was supposed to be gone by game time. It was still drizzling a little when we drove to North Little Rock and Dickey-Stephens Park, the 10-year-old minor league gem that replaced Ray Winder Field. Mary and I had been to the park once in 2010, before we had Grace, but it was the first time for the rest of the family. The potential of rain kept the tarp on the field a little past when the game was going to start, but we did get to watch them pull it off. Pulling tarp was one of the things I did when I was an intern and sometimes I miss it. Just kidding, it's like unwrapping a gift with really heavy wrapping paper, only to find that there are dead fish in the box.

Kyle and Grace throwing out the first pitch.

With the tarp on the field and the players getting ready, we met up with Paul and made our way down to the field for Grace's first pitch. We were one of four that night and were the last to go. Before our turn, relief pitcher Keynan Middleton met us and gave Grace a signed baseball from the Travs. Paul told me later that Keynan asked to catch the first pitch after he heard about our story. Needless to say, we will be rooting for him in the future. While the rest of the first pitch participants threw from the mound, I opted for a little shorter toss. It's hard to throw a baseball with Grace in one arm. That's why I moved up, not because I have the athletic ability of a department store mannequin.

All of the first pitchers and the Travs mascots.

Paul had set us up with a suite for the night, which was a big hit, especially for Quincy, who just learned to walk recently and made lap after lap in the suite. The Travelers had a fruit tray, hot dogs and cookies for us as well, which was awesome. They also gave us a couple bobble heads, hats and lunch boxes, all of which were big hits. That was just the start though. Paul brought up a signed bat for Grace a little bit later in the game and said that he'd never seen the players sign a bat so fast after they heard our story. We also got a visit from the Travelers' mascots, Ace and Otey, and I had the chance to talk to Pete again on the radio for an inning. Another highlight for me was a visit from my old boss Greg Johnston, aka Pooh Bear. Greg's an good guy and has mellowed quite a bit in the last decade. As a bonus, I got a Pooh Bear "beard" T-shirt, which was pretty amazing in its own right.

Paul brought Grace her very own bat, signed by the team.

Kyle and his new "Pooh Bear" shirt.

The game itself was awesome. Neither team gave up a run until the sixth, when the Travs plated two runs. They'd add another run in the eighth inning and our new friend Kenyan came in to close out the game in the ninth. It was a pretty amazing end as the whole family sat outside the suite and watched the final three outs. As we were leaving, we got a chance to meet up with Brett Huber, who is originally from Hillsboro, but lives in Little Rock now. It was awesome that he, his fiance and a friend of theirs came to support INAD awareness. Just as we were about to leave, a little boy named Tripp came over to us and handed a signed game ball to me for Grace. It was an amazing gesture and one of my favorite parts of the night. The boy's dad followed us on Facebook the next day and said that their family had told Tripp about our story.

Grace loved her visit from the Travs' mascots.

After a good night's sleep, we ate lunch at Damgoode Pies, an awesome little pizza place a few blocks away, and said our goodbyes. Mom and dad stayed an extra night with Shane, who was headed to Texas on Monday for a baseball tournament. It worked out pretty well for them, because my other brother Daniel and his family stopped in Little Rock on the way home from a wedding in Texas. We wish we could have seen them too, but fortunately we'll get to see them soon for my nephew Keelen's first birthday. The rest of us made the trip home to Illinois, dropping Mikaela and Quincy off in St. Louis on the way home. It was a long drive, but it was an amazing weekend, one we will never forget. The most exciting thing though is that it might not be a one time thing. Paul mentioned that he'd like to have another one next year and has some plans to make it even bigger. We can't wait.

KRH

Life Lessons From Little Achilles

When it comes to unique children's books, we may have a corner on the market. Grace has books called "Children Make Terrible Pets" and "Pirates Don't Change Diapers," just to name a few. They are lots of fun, and are as entertaining to Kyle and I as they are to Grace.

For one of her birthdays, one of Kyle's aunts bought her a book that has truly become a family favorite at our house. It's a tongue-in-cheek story, called "I'd Really Like to Eat a Child," by Sylviane Donnio.

The main character is a small crocodile named Achilles.  Each morning, his mom and dad bring him bananas to eat to help him get bigger and stronger. However, one morning, Achilles decides that he doesn't want to eat his bananas, he wants to eat a child.

When he continues refusing to eat, his parents are beside themselves, and try everything they can think of to get Achilles to eat. They bring him back a "sausage as big as a truck" and make him his favorite chocolate cake. But it's all to no avail.

As parents, it's easy to relate to Achilles' mom and dad. Somedays, you try everything you can think of to get your child to eat his or her dinner, to behave or even to go to bed.  I can remember in her early years of physical therapy, to get Grace to practice her squats, I would put fruit snacks on the floor. It's the only thing she was willing to reach all the way down to the floor to pick up.
And while not all of our efforts as parents work, we continue to try our best to do things in the best interest of our children.

Instead of eating his breakfast, little Achilles wanders down to the river, where he happens to spot a child. He can hardly believe his luck and bares his teeth. The young girl, about four times his size, promptly picks him up, tickles his tummy and tosses him back into the river. She tells him he's a "teeny-tiny crocodile, and that he must not eat very much because he's scrawny."

As he returns home, Achilles can't wait to tell his parents he's ready to eat his bananas to grow up big and strong.

Sometimes, as parents, we wonder if we ever get through to our children. We preach all kinds of things from sharing to having good manners to listening to teachers in school. And you wonder whether or not those lessons ever get through.  But I think, in the end, all we can do is the best job we can, and hope that our children will listen to us, just like Achilles.