Friday, June 30, 2017

A Little Bit Of Muny Magic

They don't call it Muny magic for nothing! And we've been so blessed to see two shows there already this summer.

Grace was excited for Charley's first Muny!
For as long as I can remember, the St. Louis Muny has been a great place to make some wonderful family memories.  Mom and dad took Johnny and I to a show each summer, and that's really where my love of theater began. And I continued to make the summer trips to the Muny as I became an adult as well.

Grace and daddy hanging out before the show.
The first summer Kyle and I were dating, we made a trip to the Muny almost every week to see the shows.  Kyle only skipped one week because he refused to see High School Musical with me. But we've always had a really good time there together.

Mommy and Charley at Jesus Christ Superstar
Grace's first show was Aladdin, when she was just ten months old.  She seemed to enjoy the music, and fell asleep in my lap for the entire second act.  That same summer, we took her to see Dreamgirls, and even though we left at intermission, it was still a great show.  We also added Seuessical, the Musical to her repertoire a few years later.

Charley's first Muny!
It seems like it had been a few summers since we had made the trip to St. Louis for the Muny. But we've already been to two shows this summer, and we've loved every minute.

Watching the Muny is hard work!
Sort of on a whim, Kyle asked me if we wanted to take the girls to see Jesus Christ Superstar on opening night.  It's always been his mom's very favorite show, and even though she had to work that night, we thought it would be fun to take the girls.

Hanging out with my girls after the show
As soon as we got off work that night, I fed Charlotte and we loaded up the girls.  We decided it would be easier to find a nice shady spot to feed Grace when we got there, and we did.  It was the first time we brought Grace that we had seats in the accessible rows, and it worked out great.  Grace got to sit in her own chair, and I think she was more comfortable.

Meeting Constantine Maroulis, who played Judas
While we were sitting in the courtyard feeding Grace, I started telling Kyle that I had been watching the news that morning and they were talking about some of the cast. He started to look up the actors on his phone, and found that American Idol contestant Constantine Maroulis was playing Judas. Since we try to give Grace as many experiences as possible, Kyle tweeted to him and asked about meeting after the show.

Meeting Bryce Ryness, who played Jesus
When we got done feeding Grace, we made our way to our seats, and enjoyed the truly fabulous show. The music was just wonderful, and the cast was great. There's just something about watching a show under the stars at The Muny that's just magical.  Charlotte slept a bit during intermission, but was very content the entire show to sit on my lap.  

After the final bow, we waited a few minutes for some of the crowds to clear out, and Kyle was still hoping we might have a chance for Grace to meet Constantine. As we gathered up our belongings, Kyle was a little disappointed that we hadn't heard anything. But as we were heading to the van, we noticed a crowd gathering around one of the entrances. So, we decided to wait a few minutes and see if we could meet him.

And it worked!  We put the girls in a small line where the crowd was waiting to get autographs on their programs.  Kyle introduced Constantine to Grace and asked if he would take a photo with our girls.  He greeted Grace warmly and asked how she liked the show.  It was a really special moment for us to watch him talk to her.  After Constantine came through the line, another actor, Bryce Ryness, who played Jesus, also stopped by to greet our girls. What touched me the most was that they both specifically interacted with Grace, not just us.  Even though Grace can't necessarily respond to them, it meant so much that they made her feel important too.

Before we left for the show that night, I had some reservations about taking both girls.  Would it be too hot? What if Charlotte cried a lot? What if it was too late when we got home?  All my worries were quickly gone once we got there, and enjoyed a family night together making memories.  There is just so much truth to the phrase, "Muny magic."

So, when the next week rolled around, we thought it would be fun to take the girls to see The Little Mermaid.  It's one I'd never seen on stage before, even though I have seen the movie a zillion times.  We got accessible seats once again, and even though Grace sat on my lap for a bit in the beginning, it was nice for her to have a place for her chair too.  

Grace was excited to see The Little Mermaid
It was another beautiful night, and the big outdoor fans do so much to keep patrons from getting too warm.  The music was fantastic with both songs we knew and some that we didn't. They had some really great puppeteers too throughout the performance. My personal favorites were Ursula's tentacles.  

Kyle and Charley cheesing in the line
But the highlights of the performance for both of us was during one big production number when two young actors were wheeled out in wheelchairs as part of the dance ensemble. Kyle and I both teared up watching them, knowing what a bright spot it was for these youngsters. They had a chance to "dance" on the Muny stage, something they probably never imagined they would be able to do. Special thanks to the Muny for honoring inclusion, and letting people of all abilities know that anything is truly possible.  I still get goosebumps just thinking about it.

Family photo op
This time, we didn't stick around afterward to meet any of the actors, we just loaded the girls up into the van in their mermaid pajamas.  Charlotte, who slept the entire second act, entertained herself the whole drive home, and was still wide awake at midnight when we pulled the van back into the drive.  I think she was still excited from the show.

Wearing their mermaid pajamas on the way home
On the drive home, Kyle and I started talking about how much we thought Grace actually got out of the experience.  Since she's not able to tell us, we don't know exactly how much she sees or hears.  I feel like she is able to see some things right in front of her face, as she still responds to the pictures in books. And I know she hears us talking to her, but neither of us know how much she takes in at something like The Muny.

But we didn't let that worry us. One thing we do know for certain is that Grace loves to be with us. And that feeling is definitely mutual for all of us. We feel so blessed to have so many wonderful opportunities to make memories together on our Grace-Filled Journey. Whether or not we get to any more Muny shows this summer or not, we will always remember our nights filled with "Muny magic."


Remembering To Celebrate The Little Milestones

This milestone started with a wiggle.  And it wiggled and wiggled and wiggled, before Grace lost her very first tooth on June 1.  
When I dropped Grace off for preschool one morning this spring, I noticed one of her big teeth was coming in behind a baby tooth. Her baby tooth was only a little wiggly at that time, and since Grace has a mostly liquid diet, she doesn't use her teeth much, and it took a long time to actually fall out.
The girls and I were having lunch with mom at the Ariston when I noticed her baby tooth had finally fallen out. So, we celebrated with a piece of dessert and lots of excitement.  Even though she had actually swallowed her tooth, we still put her special little tooth box next to her bed for the tooth fairy to come, leaving some money for her piggy bank under her pillow.
Celebrating her first lost tooth with dessert at the Ariston
After losing her first tooth, I got out Grace's baby book to fill in the spot for her first lost tooth.  It was fun to look through all the pages and photos, filled with other firsts and milestones for her first couple years of life. 
It's funny how hard it is to remember back even just a few years, and I'm awfully glad to have written down some special memories.  Much to my delight, her first word was "mama," and although Grace only ever had a handful of words, it's so sweet to remember the ones she did. Some of my favorites were ball, pup, Elmo and even amen.  
One evening, Grace and I were waiting in the living room for Kyle's dad to come and watch her. We were standing by the front window, and as he came up the walk, Grace very softly said "papa." I was so proud of her, and something I will always remember.
We put her tooth fairy box out, even though she swallowed her first loose tooth.
Although I'm not always very clever, when Grace's first tooth popped through, I noted in her baby book that it finally came through after we'd had dinner at Greasies, and she was wanting to try a cheese smack.  I also made note that one of her favorite sounds was the garage door because it meant that mommy and daddy were home.  And I'm sure glad I took the time to write down so many of her firsts from along our journey.
Grace wasn't much of a crawler until she was bigger. In fact, for the entire first year of her life, you could leave her in the room and come back to find her in the exact same place. She'd be mad you left her, but she was content to be right there. 
Grace slept right through the Tooth Fairy's visit, but she left some money for Grace's piggy bank.
As we started working with her on walking, she was really only ever able to walk between us or between pieces of furniture on her own.  One of my favorite photos is one Kyle took of Grace holding my hand while we walked across the backyard to my mom's house one afternoon.  And I can remember two very distinct times that Grace took off walking on her own.  She never made it very far, but it's something I hope to always remember. The first time was at Kyle's mom and dad's house.  Grace took off from a kitchen chair into their living room, but in trying to get Kyle's attention to watch her, I startled her and she fell. The other time was at church one morning. Grace left our pew and took a few steps across the aisle to where Nancy Harrell was sitting.  I'm not sure who was more delighted, but Grace sure was proud.
I will probably not have any memories of Grace running across the backyard to give me a hug, bounding down the steps of our house or even chasing her little sister in the backyard. But that's okay. We do our best to cherish each and every moment we do have with Grace. 
And I think it helps us to celebrate the little milestones even more.  I'm hoping to start writing in Charlotte's baby book this summer, but we've already seen so many firsts with her. She rolled over for the first time in April when Grace was having physical therapy in Springfield.  We think she wanted to show off too.  She also loves to smile and has started "talking" all the time.  We truly love every single minute and can't wait to see more firsts in the next few months.
It seems strange to say, but one of the greatest gifts INAD has given us is finding the joy in all the little moments and milestones. For us, it's not about winning the baseball game, getting the lead in the school play or even dreams of becoming president someday. On this Grace-Filled Journey, we celebrate smiles and strive to find happiness in all that we do.  

So, even though we can't wait to hear Charlotte's stories or run across the backyard someday, we'll still be finding happiness in all the little moments life has to offer.

Why I'll Always Wear A Gracelet

There's a decent chance that if you are reading this, you know what a Gracelet is, but for those who don't, a Gracelet is the purple rubber bracelet that hasn't left my wrist for the better part of the last two years.
My family has given out thousands of these purple bands, which feature the phrase "A Grace-Filled Journey" on them for awareness of my five-year-old daughter Grace's battle with the rare genetic condition Infantile Neuroaxonal Dystrophy or INAD.
Our first photo with our gracelets.
Mine said that too. Or at least it used to. With constant wear, the letters on my band have faded from sight like  a sand castle washed away by a wave. 
There's also a small cut on my band, a victim of some careless scissor work when I tried to remove the hospital band from my wrist after we made it home with Grace's little sister, Charlotte.
Gracelets on Grace's Make-A-Wish trip to Hawaii.
Even with the damage, the Gracelet has been on my wrist, looking worse for wear but still hanging on. That is, until Sunday, June 25.
That Sunday morning, with a slight pull, my tear in my Gracelet became terminal. Instead of a perfect circle of purple, I now held in my hand a strip of rubber with two jagged ends from where the separation had occurred.
Gracelets at Red Rocks Park in Colorado.
I did this of my own volition as a part of the children's sermon at our family's church. I wanted to prove a point that while this bracelet hadn't left my wrist for two years, it was what the bracelet represented that was truly important. Sort of how the cross means something more important to Christians.
The Gracelet represents a reminder to embrace the positive in everything you can, because life is extremely short and unpredictable. It represents the support that we have received and is a reminder of all of the people who care for our little girl. But most of all, it represents our family's fight to give Grace the best life possible while we still have her on this earth. 
Gracelets at Walt Disney World
We strive to give Grace these special "Wow" moments, even if she can't fully comprehend what is going on.
We have had the opportunity to present Gracelets to pro athletes like Zac Kerin, Steve Cishek, Keynan Middleton and Lisa Roberts and make them part of our story.
Gracelets at an Avett Brothers concert
We have watched as team after team has embraced our family as part of their own, hosting Grace games and even A Grace-Filled Tourney this upcoming volleyball season.
We have marveled at the places that friends have taken their Gracelets, like Japan, Scotland England and all over the United States. The fact that we can share some of those photos on our blog and on our Facebook page never fails to make us smile at the impact that Grace has had on people.
Gracelets at Busch Stadium in St. Louis
Ultimately, it doesn't matter that I am now wearing a new Gracelet. This one will likely get stretched out or cut or damaged in some other way eventually, but what this little purple band represents will never go away.

I don't need a band to help me remember Grace; she's in my thoughts constantly and I imagine she always will be. But I could use a reminder sometimes that life is way too short to be angry or negative or unkind. That's why I'll always wear a Gracelet.

Thursday, June 22, 2017

Gracie's Night At The Fair

From the corn dogs to the ferris wheel, there's just nothing quite like a county fair.  I've been fortunate enough to be around the Montgomery County Fair for nearly all my life.  Through my years in 4-H and working for the newspaper, I've spent more hours at the fairgrounds in Butler than I can count.

But tonight was different. Tonight was a special night, because it was Grace's night at the fair.

We were SO excited for Gracie's night at the fair.
A few weeks ago, I saw a news item come across the counter at the newspaper office for the fair, designating Thursday night of fair week as Gracie's night. That night, they would provide a variety of free activities for kids and families, and $1 from the price of every admission would be donated to INAD research.  Kyle and I were both so honored by their decision.

Grandma and Grandpa Galer came out to eat at the fair.
But it's not the first time the fair has supported INAD research. Two years ago, they held a 50/50 drawing during the demolition derby, the busiest night of the fair, and donated about $200 to research.  Unfortunately, we had to cover another assignment and didn't get to go out that night.

Charlotte got to meet Silas at the fair.
So, we were really excited that we had the chance to take Grace and Charlotte to the fair for Gracie's night.  Although it was Charlotte's first fair experience, Grace is already an old hand at fair activities. From cow shows to carousel rides, she's enjoyed several fair experiences with us.

Checking out the photography exhibit together is one of our favorite activities!
After Grace and Charlotte were fed, we headed out to Butler tonight in time for Kyle and I to grab some sandwiches from Sweet Addictions.  And they were fantastic.  We also took time to walk around the Arts and Crafts expo to see this year's exhibits of collections, photography, quilts, vegetables, flowers and more.

We stopped to check out the Hillsboro FFA games, including a pedal tractor pull, which was also raising donations for INAD research. Professor Longhair and Mys Jill were making balloon animals, and they made a pink flower for Grace, who smiled from ear to ear when they gave it to her.

Professor Longhair and Mys Jill gave Grace a pink flower balloon, and she just smiled.
Grace loved her new flower balloon!
We continued to walk around for a little bit, and Charlotte managed to fall asleep in Kyle's arms.  She wore herself out from all the fun at this year's fair.

Charlotte got worn out at her first fair.
But the best part of hanging out at the fair tonight was the people. We saw some coworkers, who brought their two boys and wore Grace shirts to the fair. It was fun just to stop and talk to people and thank them for coming out to show their support.  Grace even got her photo taken with the new fair queen before we left.

Grace got to meet Queen Robin before we left the fair!
We continue to be amazed by the outpouring of love and support from our communities and beyond, who help us raise awareness and funding for more research. Each and everyone of you is a special part of our Grace-Filled Journey, and together we will #beadINAD.


Thursday, June 15, 2017

We Believe In Newspapers

"We believe in newspapers." 

That was the theme of this year's Illinois Press Association convention, held in Springfield June 8 and June 9. And it couldn't' be more true.  Our family definitely believes in newspapers, and has for generations. 

First family photo at the IPA convention
I'm the fourth generation in my family to work at The Journal-News over the years, and I couldn't be more proud of the way that my family has contributed to our community for more than 70 years.  Yes, we definitely believe in newspapers. 

As far as Kyle and I can remember, Grace has attended each of the Illinois Press Association conventions since she has been born. She has also joined us for several Southern Illinois Editorial Association conventions, and is always the bell of the ball. 

Getting ready for a swim
So, we were very excited this year to have Charlotte join us at this year's Illinois Press Association convention as the newest member of the newspaper family.  She ended up sleeping through most of it, but she certainly stole the show when she was awake! 

Just splashing around
This year, we headed up to Springfield after Kyle got off work on Thursday night so we could spend the night. I was asked to help with one of the sessions in the morning, so it was easier to be in Springfield already.  And it gave us a chance to take the girls swimming the hotel pool.  Grace has always been a water bug, and it was fun to see Charlotte swim for the first time too.  They only made it about a half an hour in the water, but it was one of the best parts of the trip. 

The next morning, Kyle graciously offered to take Grace to physical therapy across town, so that I could help with one of the workshops.  The IPA had asked me to interview Art Cullen, editor of the Storm Lake Times in Iowa, and winner of the Pulitzer Prize for editorial writing.   

I was so honored they asked me to interview him for a session called "Why Real News Matters." Mr. Cullen took on some big agricultural companies in Iowa as part of his editorial series and talked about why it's so important for journalists to keep fighting the good fight and making a difference in their communities.  Charlotte was thoroughly impressed  - she slept through the whole thing on my mom's lap. 

After that, it was time to meet Kyle and Grace for the annual awards luncheon.  Kyle had to stop at Kohl's after physical therapy, because I might have forgotten to pack any clothes for him to wear to the luncheon. I have to say he was a pretty good sport about the whole thing, and got a beautiful new purple dress shirt and tie out of the deal.

We found a table in the back with my mom and dad, that way we could make a quick escape if Charlotte was unhappy.  But she did great, and we enjoyed the meal and conversation with other fellow journalists as well. This year, the newspaper won 12 awards in advertising and 11 awards in editorial content. I was most proud to win an award for my column writing, A Grace-Filled Journey, many of which can be found here in this blog.  Kyle also won an award for his sports column, and we were very honored to be recognized. 

Charley's first IPA convention
It's always nice to win awards, but it never changes what we do here at the paper.  We will continue to cover the communities of Montgomery County to the best of our ability, sharing news that makes a difference. We are so grateful to all of our readers who have joined us in the fight to #beatINAD and follow our Grace-Filled Journey.   

Yes, in our family, we believe in newspapers, because we know they make a difference. It's one reason we have been able to raise so much funding and awareness for INAD. And we won't stop until families around the world don't have to fight this battle anymore.  My dad has always said I have ink in my veins, and I wouldn't have it any other way. 


Grace Cup

Sunday, June 4, 2017

Gloves for Grace

It takes more than a little rain to keep us from raising more awareness for INAD, this time, hundreds of miles from Montgomery County.

The inaugural Gloves for Grace event was planned for Saturday, May 20, at Elmwood Park High School near Chicago, and the girls and I had the chance to head north to meet the team and head coach, Dylan Mack, who has become part of our family over the past few years.

Hanging out with the Vosses on Pizza Friday.
It started back in December, when we were in Washington DC for my brother's promotion ceremony at the Pentagon. Dylan is married to my brother's wife's sister, and we have been blessed to get to know them at family functions. Since Kyle writes high school sports for our paper and Dylan coaches both high school softball and football, the two got to talking at one of the parties about all kinds of things sports related.

Grace was all smiles when she got to meet the Elmwood Park Tigers.
At one point, Dylan mentioned to Kyle that he was interested in hosting a Grace event at his school. Emily's entire family has been so supportive of A Grace-Filled Journey since even before we knew Grace had INAD. And it was wonderful to have the chance to see them again.

Grace got her picture taken with the whole team!  

Grace loves her new autographed softball.

It was the beginning of May, and Dylan's wife, Malory, emailed to ask me about the event they were planning. She said not to worry if we couldn't come and that they would take lots of photos.  As luck would have it, that was probably the only weekend in May that I didn't have anything to cover.  Kyle on the other hand had regional softball and baseball championships to cover, and didn't get to join us.

So, the girls and I made it an adventure with Grandma and Grandpa Galer.  We headed north to Lombard on Friday after Grace was finished with physical therapy.  Charlotte slept nearly the entire three-hour drive north and Grace watched Moana on her DVD player.  We met up with Emily's mom and dad for pizza Friday, and then headed back to the hotel.

Mommy and Grace checking out her new ball and reading all the names.
After storming all evening and projected rain in the forecast all day on Saturday, Malory called me first thing in the morning to tell me the game had been cancelled.  However, the team still wanted to meet Grace!  We met them at the school, where the softball team and most of Emily's family was there to greet us.  Grace had lots of smiles for the girls, and they gave her an Elmwood Park Tigers softball shirt and a ball, signed by the whole team.  Kyle and I are still working on a display case for Grace's autographed balls, and this one will be such a great addition!

The Voss and Galer families together to #beatINAD.
Grace Lou with the Voss grandkis (Zoe, Arlie, Lincoln and Mila)
 We made sure to take lots of photos with the team and tell them a little bit more about our story.  They were all wearing purple Gloves for Grace shirts that said #beatINAD on the back.  Even Emily's nieces and nephews had little purple shirts, and there was even one for Charlotte!

Since the game got rained out, we enjoyed lunch with Emily's family before heading home, but we definitely missed having Johnny and Emily there with us to celebrate.

Although the game got rained out, the home run derby was played on Monday!
Part of the Gloves for Grace event was a home run derby that was originally scheduled after the softball game. It got postponed until Monday, and we didn't get to stay, but Malory sent me plenty of photos. She also texted me to tell me they raised $750 for INAD research and were hoping to raise even more next year.

Snapshots from the home run derby.
The team helped to load the pitching machine.
Coach Dylan takes a swing in the home run derby.
We are constantly amazed and humbled by the generosity of people that we know and those that we don't.  These girls and their families at Elmwood Park High School had never met us or heard or story before Gloves for Grace, but they are now a special part of this Grace-Filled Journey.

Little fans make a big difference too!
Zoe helped out with the home run derby too!
Although INAD continues to steal so many of Grace's abilities, our journey will continue to raise awareness and funding for this terrible disease. And we will be forever grateful to each and every person along the way who helps us to #beatINAD.