The Totality Of Your Experiences

My job at The Journal-News has given me some pretty unique life experiences so far. I’ve been able to cover UFC events, watch state championship games and meet elite athletes.

I’ve also been able to blend some of those opportunities in with my beautiful wife Mary and I’s quest to give our five-year-old daughter Grace as many unique experiences as possible since she was diagnosed with the rare degenerative genetic condition INAD, which carries a pretty grim prognosis as most children with INAD don’t live to see their tenth birthday.

NFL Pro Hall of Famer Kellen Winslow in his new Grace scarf.

Thursday, April 20, was one of those instances, even though neither Grace nor I were there for the part that involved our journey.

That Thursday afternoon, I returned to my alma mater of Lincolnwood High School to cover an awards ceremony for a special young man. Ryan Poggenpohl, a junior at Lincolnwood, was a finalist for the U.S. Army Pro Football Hall of Fame Award for Excellence, and I couldn’t think of a better candidate to represent my school and my hometown of Raymond.

Ryan’s success as an athlete and student are commendable, but his passion for military service is above and beyond. He has worked incessantly on achieving his dream of joining the U.S. Naval Academy and serving his country, something that I don’t know I could have even imagined at his age.
As part of the award ceremony, the school was paid a visit by Kellen Winslow, Sr., representing the Pro Football Hall of Fame. I knew a little about Winslow, who is among the greatest tight ends to play the game, but I wasn’t sure how the ceremony would go. I’ve seen other speakers just go through the motions and you forget what they’ve said before you reach the parking lot. I’m happy to say that Winslow wasn’t one of those individuals.

Before and after the event Winslow was gregarious, quick with a smile and more than willing to pose with anyone who asked if they could get their picture with him.

He was one of the last people out of the gym that afternoon, talking to a few students and even ribbing Lincolnwood senior K.J. Wolff for wearing his Terry Bradshaw jersey to the event.
My highlight at the time was that I got a chance to tell him a story that my Uncle Joe has been telling me for years. Joe’s brother John was the same age as Winslow and was aggravated that when awards were being passed out after the season, he was a first team pick, while John was a second team selection, despite Winslow playing just one year of high school football.

“I was blessed to play for a really, really good team. We had three guys that were offered Division I scholarships and it should have been four,” Winslow said, adding with a laugh. “He was probably right. I only caught 17 passes that year.”

It was fun to get to rehash the story to him and it will be one of two things I will always remember about the awards ceremony. The other came from a small section of his presentation, which spoke about life experiences.

“I encourage you today to not take the lows too hard, to not take the highs as the place where you will be the rest of your life and to think about going out there and having as many life experiences as you possibly can that are going to add to you being the best person you possibly can,” Winslow said. “That’s what life is. You are the totality of your experiences.”

That could be the mantra of our Grace-Filled Journey. We know that our time with Grace may be limited so we want to make sure that we have as many life experiences as we can while we still have her. Life is the totality of our experiences.

When we look back at Grace’s life, we won’t just remember the struggles of dealing with this awful disease. We won’t just remember all the good things and forget the trying times. We will remember everything. And it will help us cope and get through life without her, if that day ever comes.

That small section of the speech would have been enough to make the day special for me, but it became way more special on the drive home. As I was getting back to Hillsboro I received a text from my buddy Kendal Elvidge, who is the principal at Lincolnwood High School, a fact that still seems extremely weird.

Kendal has been taking photos throughout the school year of positive things at Lincolnwood, using the hashtag #InspiredByGrace, with a Grace-Filled Journey scarf present in each photo. I knew he was planning on doing one with Kellen Winslow and Ryan Poggenpohl, but I didn’t expect what transpired during their photo session.

“Can you bring me a new Grace scarf? Kellen bought mine,” Kendal’s text read. “I told him the story behind it and he said ‘Well your scarf is now my scarf’ and handed me 2 $20s.”

My jaw hit the floor. I had considered bringing Grace to the event or talking to Winslow about our journey, but I didn’t want to take anything away from Ryan’s experience. For Kendal to take a few seconds to share our journey means the world to us. It was only a brief moment, but for Mary and I, it will always be something we remember.

Life is the totality of our experiences and this one made our life just a little bit better.


krh

The Joys Of The First Day Back At Work

After eight weeks on maternity leave, I returned to my desk for the first time Easter Sunday.And it looked just like I left it, piled high with stuff and kind of dusty.

Since my first official day back was a paper night, I spent my time helping to do up news items and laying out pages. Then, I tackled cleaning off my desk (including the dusting) the first part of the week.

With Charlotte arriving two weeks ahead of schedule, I did still have a few stories to work up while I was home on maternity leave, but for the most part, I stayed home with the girls and enjoyed my time adjusting to life as a family of four.  I'm not exactly sure how adding one seven-pound human to the mix adds so much else to do, but I definitely stayed busy.

It sure seems like those eight weeks flew by in a hurry, and though I was sad to leave the girls, I knew they were in good hands. We are very lucky that Kyle's mom and dad keep them on paper nights and my mom watches them three afternoons a week, which makes going back to work just a little easier.
Plus, I really love my job.

When I worked for a daily newspaper in Indiana, my editor told me once that you either have to pursue a career in something you love or pursue a career in something else, which will allow you to do what you love.

I can't say that I have always thought I would love journalism. In fact, I spent most of my adolescence telling people that I would not be working for The Hillsboro Journal.
I had decided I wanted to be a teacher, preferably early education. Since then, I've decided that God probably did not give me enough patience for that profession!

It was after I started working as a darkroom technician for the newspaper when I was in high school that I really fell in love with photojournalism. I had big aspirations to travel the world taking photos for National Geographic or another large media outlet.

But somewhere along the way, I found out that I'm much better suited for community journalism, and I've never looked back.

My first job after graduating from Mizzou was for a small, daily newspaper in southern Indiana, in a rural county, roughly the size of Montgomery County. I discovered how much I loved sharing people's stories and being part of the community.

Through covering things at the schools, kids would see me at Walmart and stop to talk to me. Most of the time, I didn't know their names, but they sure remembered mine.
It's a good feeling, knowing that you can make a difference in your community through what you do each and every single day.

You get to know the people who serve on the school boards you cover or the people who plan community events.

Yes, it's a much different feeling covering news in your community rather than in a big city. You realize that you're going to run into the people you write stories about, and that it's always someone's neighbor or relative.

But to me, the biggest reason I love community journalism, is the community.

I love seeing our community come together time after time for those in need. Whether it's raising money for local sports teams or families facing medical expenses, our communities come together over and over and over again. It sure seems like there's never a need that's too big.

And though I spent a decade writing stories about the people in our communities, I got to know first hand their generosity when Grace was diagnosed with INAD.

Together, our communities have raised substantial funding for INAD research in the past two years. It's truly humbling to have people call and ask how they can help, plan bake sales or other fundraisers. It's been amazing.

There's sort of an unwritten rule in journalism that you don't make the news, you cover it. I would have to say we've broken that rule at least 50 times with Grace's photo in the paper. But as a mom, I also know you use all the resources at your disposal to help your child. And we feel lucky to have such a wonderful community to support us.

Yes, there were times I envisioned taking my talents to a bigger newspaper or media outlet, covering bigger stories. But my heart lies in Montgomery County and being able to share the stories and values of the wonderful people who live here.

It's great to be back on the job.

mlh

Making Memories This Easter

Memory is a way of holding onto the things you love, the things you are, the things you never want to lose. ~From the television show The Wonder Years

Ever since Grace was diagnosed with INAD, we have done our best to make as many memories as possible with her. In all honesty, we don't know how much she gets out of some things we do, but they are memories that Kyle and I will be able to carry with us for all our lives.

Taking Charlotte and Grace to see Beauty and the Beast

I can remember when Grace was born, we took her to the pumpkin festival at Broom's Orchard in Carlinville when she was just a month old. We dressed her in a Halloween outfit and bib, complete with an orange headband and took her to pick out her very first pumpkin. We talked about being able to bring her back when she could do the pony rides or feed the goats, excited for the time when she would be able to participate in many of the activities. 

Waving palm branches on Palm Sunday at church.

Mommy and her girls on Palm Sunday.

It's a challenge at times, as it's always a big job to take Grace somewhere. And since it's harder for her to sit up and hold her head up, I'm often not sure how much she gets out of some activities, but we keep trying!  A few weeks ago, we had been talking about taking Grace to see the new Beauty and the Beast movie.  I didn't want to go on opening weekend as so many people brought their little girls dressed up as Princess Belle. It's awesome to see the kids all dressed up, but it's often hard for me not to wish that could be Grace, excited to get all dressed up and go to the movies.  

I got to help Grace with an egg hunt at preschool.

Grace and her preschool friends after the egg hunt.

Being silly at her preschool party.

So, we waited a few weeks until the newness wore off. In fact, we were some of the only people in the theater for that show. We picked out a couch, and Grace snuggled on Kyle's lap for the entire thing. I don't know how much of it she was able to see, but she would smile during some of the music. And Kyle always reminds me that Grace's very favorite thing to do, is to be with us.  So, even though Grace probably won't remember the movie, Kyle and I will always remember the first time all four of us went to the movies together. Oh, and it was a really great movie too!

Helping Grace to color a pink Easter egg.

Grace and I liked coloring eggs together.

Daddy helped Charlotte dye a purple egg.

Family photo after dying Easter eggs.

Holidays are another bittersweet time to make lots of memories.  We love being together with our families, but it's tough at times too, just wishing that Grace has some of the same chances as other kids.  But I'm always glad that everyone works so had to make sure Grace can still be a part of things.

Grandma and Grandpa Galer helped Grace hunt eggs.

Having so much fun with Grandma and Grandpa Galer.

Mommy got to have fun with the girls too.

Over the past few years, Kyle and I have let Easter egg dying get away from us.  We always talked about doing it, but Grace couldn't tell us she wanted to do that, so we just didn't make time for it. This year, Kyle's Grandma Virginia gave Grace a Minnie Mouse Easter egg dying kit, as well as a whisk like device to hold the eggs when you color them. I had never seen anything like it, but it allowed us to be able to help Grace actually dye the eggs.

Charlotte's first Easter.

My two beautiful Easter bunnies. 

Although neither of us really likes to eat hard boiled eggs, we decided it would be fun this year to help both the girls color Easter eggs. Since we weren't actually going to eat them, we opted to just do six eggs, three for each girl. I held Grace's hand while we dyed eggs together, and Kyle held Charlotte while they dyed eggs. Kyle even mixed the blue and pink together to make a final purple egg.  And while neither girl was super excited about it and will probably not remember it, Kyle and I enjoyed spending the evening together making memories.

Family photo after church.

The next night was the annual Easter egg hunt and Grandma and Grandpa Galer's house. Grandpa John hid eggs in the front yard with money in them for their savings accounts. We put Grace in her wagon and pulled her around the front yard while I carried Charlotte. Dad helped them hunt the eggs. He tossed Grace's in her wagon and she would just giggle and giggle. I have to say it was one of my favorite parts of the Easter weekend. Charlotte pretty much slept through the whole egg hunt, but I managed to take a few photos to prove she was there.

Charlotte meeting Aunt Kristy for the first time.

Snuggles with Grandma Virginia

Grace found a purple egg!

Kayley and Kensey helped Grace find Easter eggs.

Hanging out with all the Herschlemans

Our family on Charlotte's first Easter.

On Sunday, we awoke to find the Easter Bunny had brought baskets to the girls, and I did a mini photo shoot with Charlotte in her crocheted bunny hat. Her Easter dress didn't arrive in the mail until Monday, but the girls still looked awfully cute, and I was grateful to attend church all together. 

After church, the Galer family met at the Ariston for a nice brunch, followed by an Easter egg hunt with Kyle's family in Raymond. His cousins, Kayley and Kensey (some of Grace's biggest fans), helped her and Charlotte hunt eggs in the back yard. There were even a few special ones just for Grace with nail polish and a bracelet from his aunt in California, since she can't eat the candy. I'm not sure who had more fun, Grace or the girls. 

We definitely had a chance to make a lot of family memories over Palm Sunday and Easter weekends. Neither of my girls will probably remember any of the things that we did, but I'll always know that we were together. And even though Grace can't participate in some of the activities herself, I'm so grateful for those who help her experience those things. Because trust me, they are things I will always remember!

mlh