Special Moms Stick Together

Looking back at some newspapers over the past year, I couldn't help but smile as I stopped to look at this year's Hillsboro High School Prom King Dalton Tefteller, whose million dollar smile is one for the record books.


You just can't keep yourself from smiling when Dalton looks up and smiles at you. It's purely contagious, and even award-winning. Yup, Dalton was the champion of the Illinois State Fair smile contest several years running.

Angie took this photo of us with Dalton at his graduation party.

But I got to know Dalton's smile long before he was famous. He was just two or three when I met he and his mom at Litchfield McDonald's. They were the representatives that year for the restaurant's Give a Little Love campaign, which raises money for the Ronald McDonald House.


The Teftellers had stayed at a Ronald McDonald House, after Dalton got sick, just after his first birthday. His mom, Angie, told me that he went from being able to walk and crawl, to being unable to do so, and no one had any answers. At the time, the best they ever got was that he had some kind of a virus that could possibly have caused brain damage.


When I did the story for McDonalds, I remember Angie telling me they were going to send the story to Ellen and other celebrities in hopes of raising some awareness and finding some answers.
I didn't know then when my path crossed Angie's that she would be someone so inspirational and helpful on our Grace-Filled Journey. And I'm blessed to call her my friend.


If you asked Angie about where she gets her strength and courage, she would probably just shrug it off, saying that she just does what has to be done for Dalton. And she means that.


She spent the better part of ten years fighting to find a diagnosis for his condition. It wasn't until whole exome sequencing became available, they were able to diagnose him with Aicardi-Goutieres Syndrome. It is characterized by weak or stiffened muscles (spasticity), and cognitive and developmental delays that range from moderate to severe.


Angie checked in with me periodically over Dalton's childhood for various stories about his progress. One of my favorite photos is Dalton with Dr. John Mekala of RehabEdge, where it's hard to tell whose smile is bigger. Dalton just kind of brings that out in everyone.


So, I always kind of felt like Angie was a good acquaintance of mine. I loved hearing how Dalton was doing and seeing his smile. But it wasn't until my own journey Angie became such a great resource for me.


Although their diagnosis is different, Angie and I have been on much the same journey in taking care of our kids.


Some days, that means spending hours (yes, literally hours) on the phone with insurance companies trying to get them to cover this or that because you know how much it would benefit your child. Sometimes, that bubbles over into tears or anger at the process. For me, it's the time it takes to deal with insurance companies - time that takes away from things with Grace. And I definitely begrudge things that take my time from Grace.


Other days, it's tears of sadness. While neither of us would trade our Dalton or Grace, some days, it's hard not to grieve for the dreams we had for them. I saw Angie one day, and she told me how hard it had been when Dalton turned 16, and she knew he would never be able to get his driver's license.

That same thing happened to me. I was on assignment this summer taking a photo at Vacation Bible School, and I saw so many of the kids in Grace's class singing the songs and dancing. After I got home, I just cried wishing Grace could have been there singing and dancing, wishing I knew what her sweet voice sounds like. 

It's friends like Angie that help you make it through those tough times, because they've been there too. They know what it's like not to pack a bag of baseball shoes and a bat for T-ball practice or celebrate a special dinner for an outstanding report card. Some days, things like that can be unbearable.

But it's also friends like Angie who remind you just how special Dalton and Grace really are. Grace has a smile like Dalton's, and hers is also quite contagious. Her smile reminds me that life is always to be celebrated. It may not come in the ways that we planned, but every day has something worth celebrating.

And this month, I'm very grateful to my friend, Angie, for always reminding me that "life doesn't have to be perfect to be wonderful."

Celebrating Some Inspiring Fathers

My dad always says the best gifts you can give your children are roots and wings, and I think he's done a pretty great job with that over the years.


As I continue to think about the people that inspire me in my life, my dad always comes to the forefront. He's someone whose passion for life abounds in every facet of his life, and he shows kindness and generosity to everyone he meets, even if he still can't "make a long story short."

Two of the best dads I know!

Growing up in the newspaper business, I think my brother and I often begrudged the number of times we thought we were being "drug" along to certain events. But really, my dad was showing us how to be good community members. To this day, I buy raffle tickets from anyone who asks me, and we certainly do our share of eating at benefit meals. And it's not just because I don't like to cook!


I can't think of anyone who loves his community more than my dad. He's proud to be a graduate of Hillsboro High School, and still remains active in many organizations that make our community a better place to live.


And while you won't find my dad anywhere else but on the sidelines of a Hillsboro football game on Friday nights, he has always encouraged Johnny and I to find our own paths.


When I was in high school, we toured a variety of colleges, including his alma mater, Eastern Illinois University. Dad never finished college, and he joked with the admissions counselor that maybe he and I could graduate together. I was less fond of that idea.

Dad and Grace

One rainy day in February, we found ourselves on a tour of the University of Missouri in Columbia, billed as the world's oldest journalism school. I had big aspirations to be a world-famous photographer for National Geographic at the time. And as we got in the car to go home, he looked over at me, and said "Lou, if this is what you want to do, then this is where you need to be."


And that was that. I studied journalism for four years at Mizzou, even spending one semester working in London. I took a job at a small, daily newspaper in Indiana after college. I had pretty much decided that I wasn't cut out for big city life, but I also never really thought about coming back to my roots either.


One weekend, I came home to shoot a Friday night football game for my dad. After the game, we sat at home just talking. He and mom were working on a deal to put the two newspapers in Hillsboro together, and he asked if I would come home and help be part of the process. I was honored that he asked me, and that he valued my input so much, he wanted me to be part of the project.

Dad and Charley

It took me a long time to understand what my dad meant by giving us roots and wings, but I think he did a pretty good job. He's always encouraged our dreams, even if they sometimes led right back home. And I'd like to think he shared some of his passion for his community with me too.
And while my dad gave me roots and wings, there's another dad in my life, helping me do the same for Grace and Charlotte.


When it comes to dads, he's one of the best, and someone who inspires me with his passion for life too. After deciding to return home, I prayed God would put someone in my life that would be able to help me at the paper someday. I didn't know that meant marrying the sports editor, but Kyle is also someone who is very passionate about the community and Montgomery County as a whole. And he works hard every day to make it a better place.


And while that in and of itself is inspiring, it's his passion for Grace and Charley that makes me so happy.


I read in a book once that the divorce rate of parents with special needs children is higher than one in every two. That means more than half the marriages where special needs children are involved don't make it. Why? Because it's the hardest thing you will ever do. In addition to things all couples argue about, like money or who took out the trash last, you have the added pressure of raising a child with very special needs. In our case, we are taking care of a child with a terminal illness, who can't tell us any of her wants or needs and depends on us for everything. There's no reprieve when she goes to a friend's house. There's no down time while she plays by herself. Grace needs one of us for every single minute of the day. And while we wouldn't trade this journey for anything, it can be overwhelming at times.


But instead of dwelling on the hard times, we try our best to focus on the positives and live each day to the fullest. Thanks to a couple of really great sets of grandparents, we also usually make some time for a date night every now and again.


I've come to learn that the road on this journey is never easy. And I'm pretty sure that's true for everyone, even though we all face different struggles.


But my dad is right, the best gifts you can give your kids are roots and wings. Even though sometimes I feel like my wings are flapping, but I'm not getting anywhere, I know that my strong family roots are always there to lift me up. And I hope someday that Charlotte will feel like those are the best gifts she's ever been given too.

mlh

Learning To Survive The Grace Cup

Two weeks ago I decided that the fourth annual Grace Cup would be the last.


I was dreading the stress of the day, which included worrying whether or not I would have enough players to host not just one, but two soccer games. When the success or failure of an event that is so close to your heart lives or dies on the whims and social schedule of 17 and 18 year-old kids, it can be a tad worrisome.

2018 Grace Cup Boys and Girls Teams

In the few days before the games, which brought together some of the best small school soccer players from our area, I had made peace with the fact that we would have to do 7-on-7 for the inaugural girls game and that I'd have to reshuffle the boys' line-ups due to last minute dropouts, but now I had the weather to worry about. All week long, it looked as if Mother Nature might let loose with the water works right about the time that the games were in full swing.


As it turns out, all that stress was for nothing. I have no better chance in controlling the actions of teenagers than I do in controlling the weather patterns that seem to change from minute to minute in central Illinois.

2018 Lincolnwood Alumni Game

Brothers - and goalies in the Alumni Game

 What I do have control over is my ability to surround myself with good people who make the Grace Cup a success, not just monetarily, but also in terms of raising awareness for infantile neuroaxonal dystrophy (INAD) in honor of my daughter Grace, who is battling the disease.


While I was stressing out about how many players we would have and what those players and their families would think if the game wasn't up to par, others were working to make the game a success behind the scenes.

Charley playing soccer with her cousins.

Herschelman cousins at the Grace Cup

 Lincolnwood soccer coach Joe Webb, his wife Ashley (Young) and other members of the Webb and Young families made sure that the field and concession stand were ready to go, a process that I wouldn't have the first clue about.


Travis Matthews, one of my closest friends since I could walk, took care of game balls, referees and inviting some special guests, some of his youngest players from Impact FC, who walked out with the big kids. The looks on the faces of the younger players reminded me why I wanted to do the Grace Cup in the first place, to grow the game of soccer, in addition to raising awareness for INAD.

Daddy and his girls before the game.

There are plenty of others who helped out too: Aaron Webb, Kyra Shull, Charles Babcock, Kenny Lauderdale and Berry Lauderdale, who all helped out with the scoreboard, braving biting insects and errant soccer balls during the process; Renee Wynn at Creative Flair for getting the shirts done despite my tardiness in getting her the final numbers; Dave Mattson, Brent Stuckey and Ryan Webb, who handled coaching duties along with Travis, making sure that everyone felt like they got as much out of the experience as possible; and the Beeler and Helgen girls, who acted as a welcoming committee and handed out rosters to the public.


I'm sure there are others who played a role that I'm forgetting, for which I'm sorry, but no one helped more than my beautiful wife Mary. In spite of her more than valid concern over my mental health when I said I wanted to add a girls game to the mix, I didn't hear one "I told you so," when I had my greatest struggles.

Galer/McLaughlin Clan at the Grace Cup

Herschelman Family at the Grace Cup

 Without the aforementioned people, the day of the game would not go as well as it does. Without Mary, it wouldn't happen at all.


Even with all of my crazy the past few weeks, she has encouraged me to not give up on the Grace Cup. She has reminded me that it's always better once its over and that the impact on the players and their families is what matters.


And she's right. Even if only a few of those kids were moved by Grace's story, it's worthwhile. This year we had two former Grace Cup players officiate the game, Brendan Zeller and Steven Cowles (along with Steven's brother Joe), while Kenny Lauderdale and Aaron Webb have also played.

Fun family photo together at the Grace Cup

It's always neat to see players from previous years follow us on Facebook or on Twitter. That's one person that may never have heard about INAD before that feels at least a small connection with our story.


So, I guess what I'm trying to say is that this year won't be the last Grace Cup. I know that there is a pretty good chance I'll be pulling my hair out next June, hoping that the players show up and that the weather stays dry, but I also know that anything I go through is way easier than what Grace has to go through every day.


Thanks to everyone who supports us on our journey and we'll see you next year at the Grace Cup on June 8.

krh