Saturday, July 30, 2016

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.

Monday, July 18, 2016

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.

Saturday, July 9, 2016

Never Alone

Never alone. We are so blessed that we are never, ever alone on this Grace-Filled Journey.

In the last two weeks alone, we've had several friends share gifts with Grace or notes in the mail, just to remind us that we're never alone. Her friend Lindsey Storm brought her a stuffed Minnie Mouse and a stuffed Pluto from her family vacation to Walt Disney World, and Erin Kistner and her mom picked out a darling new pink doll that Grace just loves to snuggle with. One of her preschool friends, Dahlia, brought Grace a darling new outfit and mailed her a photo she'd painted. A young girl named Faith Overton from Raymond mailed Grace a photo she'd drawn with a beautiful poem and just over $100 to donate to INAD research. And this week, the VanOstran family made a Minnie Mouse wall hanging for Grace's room.

Yup, we definitely feel pretty blessed to be loved by so many. And to have such awesome support from our community has helped us raise more than $100,000 for INAD research at Washington University in St. Louis.  When we started, our goal was to raise $10,000, and I thought even that was a stretch, but all those on this Grace-Filled Journey have proved me wrong over an over again.  

In this blog, we want to recognize some of those donors who might not have been mentioned in other blogs since the beginning of the year. We are truly grateful for your love and support, and your help on this journey. It always helps to remind us that we are never alone.

Local Businesses

Shortly before the new year started, Greg Holcomb of Country Financial in Hillsboro told me his office had a donation to INAD research. Throughout the year, they held "jeans days" on Friday, where staff members could wear jeans in exchange for donating $1 to the cause. Grace and I stopped by the office one day for a check presentation photo for the paper, and so that everyone could say hi to Grace. 

Our friends at Country Financial held "jeans days" for Grace.
Another thing that was started in 2015 was a fundraising drive at one of our favorite restaurants in Hillsboro, Lomas del Sol. Grace had eaten there with us many times, and they asked if they could do something to help. So, we took some gracelets by and a canister to collect donations on their front counter. The restaurant manager stopped us earlier this year to say the bucket was full, including over $100 in donations. We stopped for a photo for the newspaper, but they wanted to make sure we brought another bucket back in for the counter, and it's still there for customers to make a donation to INAD research.

Our friends at Lomas Del Sol have been raising funds for the past year!
Our newspaper families have been good to us as well.  The Illinois Press Association published our story this year, and we have received contributions from the Macoupin County Enquirer Democrat as well as the The Okawville Times. It's been neat to see these businesses stand together with us and show so much support.

Local Schools

It's been really fun for us to see the local high schools get involved with our story. Some of the sports teams have worn gracelets or hosted penny wars and other fundraisers. The soccer team from Lincolnwood High School even participated in the Grace-Filled 5K as a team.  I have just really enjoyed seeing the kids who are such a part of Grace's story.

From volleyball to soccer, it seems like Lincolnwood one was of the first schools to be in our corner, and continues to stand in support of our journey. At the beginning of the year, Kyle picked up a check from the Lincolnwood Community Service Organization. They earned $550 for a local charity from helping to host Central Illinois Community Blood Center blood drives, and they picked INAD research for their donation.

The Lincolnwood Community Service Organization donated their blood drive winnings to INAD research.
Then, in the spring, the high school softball team joined forces with the junior high's Fellowship of Christian Athletes, who hosted a bake sale during the weekend softball tournament.  Finally, the senior class had a donation for INAD research from the sale of their class shirts.  It's just been amazing to see the kids join our journey!

Members of the high school softball team and junior high FCA teamed up for a fundraiser.
The senior class donated part of their T-shirt money to Grace.
At Nokomis High School this year, both the football team and softball team wore gracelets, and shared photos for the occasion. This spring, their Student Council hosted a special fundraiser, called P'Jammin'. Students could wear their pajamas to school on Fridays for several weeks if they donated $1 to INAD research.  We stopped by one day on lunch for a check presentation photo, and Grace was giving out lots of smiles.

Nokomis students wearing their pajamas to school!
The Student Council gave Graee a check for their fundraiser.
Direct Sales Businesses

Earlier this year, you probably read about Sparkles for Grace, which was a Premier Designs jewelry party that raised money for INAD. Since then, several other direct sales business vendors have generously hosted parties for Grace as well.

Our friend, Jo Brummet of Nokomis, hosted a Stampin' Up party from January to March and helped to raise money for research. Stampin' Up includes a wide variety of rubber stamps and other scrapbooking suppplies.  In addition to her fundraiser, Jo is always bringing me handmade cards she created to send out to others, and I just love it!

Then, in March, my cousin's wife, Lindsey, and her family hosted a Rodan and Fields party, called Fresh Face for Grace. The best part was that I was invited over to her house for the evening, where her sister, Chelsie, explained how all the products worked.  Kyle stayed with Grace, and I had such a relaxing evening out with the girls, as well as helping to raise funds for INAD research. 

And in case you are still looking for ways to participate, one of my high school classmates, Stefanie Howard, is hosting a Norwex party during the month of July, and donating 20% of the proceeds to INAD research.  We're pretty excited about it, and I'm looking for some new cleaning products for the house!

Service Organizations

Throughout our journey, several of the local services organizations have stepped up and joined A Grace-Filled Journey. Some have helped cook at local events, or raised money for research or to help Grace.

This spring, Ducks Unlimited held a special fundraiser at their annual banquet for the second year in a row.  They raffled off two pink duck calls and split the funds between Grace and another little girl from Litchfield, named Faith.  This year, they donated half the funds to INAD research and half to the Faith Hartzell Memorial Scholarship fund.

Also this spring, one of Kyle's friends contacted him about a sorority that his mom belongs to in Litchfield. Each year at their mother-daughter banquet, they take up a collection for a charity, and this year, they picked INAD research.  Grace and I had hoped to attend in person, but it was the same night as the mother-daughter banquet at our church.  They ended up collecting around $300 for the study, and we still hope to get to one of their meetings to say thanks.

Countless others have given donations, left memorials or just said a prayer for us. This summer, Kyle's graduating class from Lincolnwood donated the remainder of their class funds to INAD research.

So, you can clearly see that we are blessed not to be alone in this journey. Grace has SO many people that love and support her, and we feel so grateful to be a prat of it. Whether you shared a card or a text, participated in a fundraiser, or even keep a gracelet on your wrist, we're so glad you're a part of this Grace-Filled Journey.


Friday, July 1, 2016

Making Every Day Count

Some days it sure does seem like we run an awful lot. Whether it be to and from Grace's doctor's appointments or therapy sessions or work assignments for Kyle and Mary, it seems like we are on the go a lot.

Our day off from work has been Friday since before Kyle and I got married. But the last two and a half years, we've used that day to take Grace to physical therapy in Springfield, where they specialize in pediatrics.  And it's not that we've actually been there every Friday, but usually if Grace has an off-week from PT, we usually have other plans, or make some.

But after a very busy few weeks in June, we decided to have a quiet few days at home this weekend.

Lately, we've been making a bigger commitment to cook and eat at home, which is also tough considering our schedule, but it's been good for us. So, with an evening at home on Thursday night, we made tacos for dinner, and settled in to watch Minions and snuggle on the couch.  We even let Grace stay up a little later since we didn't have to get up as early in the morning to leave for PT.  And it was such a fun time to snuggle on the couch together.

Just clowning around during family movie night!
All three of us managed to sleep in a bit on Friday morning, which was also a nice treat. For most of the morning, we lounged around the house in our pajamas.  We got a few things done around the house, but also enjoyed the slower pace.  Grace and I had fun playing with her princess castle, blowing bubbles and just smiling and laughing at each other.

Grace goofing off with her daddy!
As we started to talk about the day, Kyle suggested we take Grace to a matinee to see Finding Dory at the Orpheum. It's something we had been talking about, but we don't always make it to the movies.  Since it was such a beautiful day, we opted to walk uptown for the movie.  We booked one of the couches, and snuggled in to share our popcorn with Grace, which I think was her favorite part.

Family movie outing at the Orpheum.
The popcorn was Grace's favorite part!
I told Kyle on the walk home that I was proud of him for suggesting Finding Dory.  I'm not really sure how much Grace gets out of the movie itself. She would probably have been just as happy to be with us at an adult movie, instead of a kids one. But, Kyle looked at me and smiled, saying that he just tries to treat her like any four-year-old, and most four-year-olds loved Finding Dory.

When we arrived home, Kyle took charge of dinner, making pizza on the grill. It was his first try, and it turned out great.

Yummy pizza from the grill!
So, while our blog is usually full of events celebrating Grace or trips, we also wanted to share a bit about a fun day at home. If there's one thing INAD has taught us, it's to enjoy each and every single day as they come. So, whether it's a big trip or a just a chance to be together, we celebrate each moment we have with Grace.


Face Your Fears, Just Like Grover

Reading has been a huge part of my life for as long as I can remember. I have always loved the Berenstain Bears and Corduroy, the Babysitters Club and Sweet Valley Twins, and even Nicholas Sparks in my adult years. In fact, reading was one of the things that brought Kyle and I together. We often exchanged books while we were dating, and then talked about them over dinner.

Shortly after Grace was born, Kyle brought out two of his favorite childhood books, "The Monster at the End of this Book" and "Cookie Monster and the Cookie Tree," both featuring some of his favorite Sesame Street characters. His mom told me she must have read those books a million times to him growing up.

We were delighted that Grace loved Elmo as a baby. She would light up anytime we saw him on television, and always had one to snuggle in the days before she adopted a pink puppy, named Bruce.  

One year for Easter, we were surprised to find that "The Monster at the End of this Book," has a sequel featuring Elmo, called "Another Monster at the End of this Book," which happily made its way into Grace's Easter basket.

"The Monster at the End of this Book," which was originally published in 1971, features Lovable, Furry Old Grover, albeit a bit scruffier than he appears in the sequel, which was published in 1996.  

As the first book opens, Grover is terrified when he reads the title of the book, and is scared to find which monster is at the end of the book. Throughout the book, he works hard to keep the reader from turning pages and getting closer to the monster.  Even though he ties the pages together, then nails them, and finally glues them, persistent readers will find their way to the last page, only to discover that Grover is the monster at the end of the book.

As the second book opens, Grover is once again scared of the monster at the end of the book, but Elmo seems excited to find the monster. Grover tries his best to keep Elmo from getting to the end of the book, but readers eventually find their way to discover Grover and Elmo are the monsters at the end of the book.

Grace especially likes when you read with excitement in your voice about Grover being scared, and she likes to help turn the pages, and always smiles when we find the end of the story.

While I don't think Grace understands enough around her to be scared or have fear, these books teach us a lot of good lessons about facing your fears.  While Grover is scared of the monster, he keeps going and finds there was nothing to be scared of after all.

Personally, I'm rather scared of snakes and spiders, and sometimes heights. And while I don't always face those fears daily, I know that I could if I had to, and that I would be stronger for it.  

My biggest fears have nothing to do with scales or furry insects, but rather facing a time in my life without Grace. And while someday that may be a reality, it's definitely not today. And living in fear, means that I would miss so many wonderful things happening each and every day.  By facing my fear, I have a chance to enjoy every minute I have with Grace. Being scared to lose her doesn't add one day to the amount of time I have with her, and I don't want to miss a single second of being her mom.

Much like Grover, I keep finding my way along the journey by facing my fears and moving forward. Fears can be tough. They can keep us from remembering the things that are most important in our lives. But take it from me, and from Grover, when you face your fear, you find that it makes you stronger.