Tuesday, February 24, 2015

Fun In A Fortnight

When I was a kid, my brother and I used to make forts in the living room. They were pretty fancy, usually involving some sheets, the couch and coffee table and some heavy books to keep the sheets from falling down. The books may have fell on my head a couple times. Maybe. I don't really remember.
Grace and I outside Fort Herschelman.
With a rare night off, I decided tonight would be an awesome time to relive my childhood and show off my tent building skills. Mary loved the idea and after work, I got to it. Again, a couple sheets, some clothes pins, a rubber band or two and an unused ab roller and we were in business.
Grace loved playing in the tent. After a little drum practice, she and Mary made their own fort.
The tent took up most of the living room, stretching from the TV to the love seat. It was a little small for me, but short of drilling holes and hanging it from the ceiling (mental note for next time), pretty much everything would be.
Not only did Mary and Grace make their own Duplo fort, but they also made a cage for Bruce.
It took about a half hour to build, every second completely worth it when Mary and Grace saw the end result. We waited until after dinner and Grace's bath to give it a test run, although Mary may have camped out in it while Grace and I were upstairs since I had blocked off all the usable seating. After bath time, with the Nokomis boys basketball game on the radio, the three of us played in the most secure fort this side of Fort Knox.
Family selfie from Fort Herschelman.
Grace really seemed to enjoy it, almost as much as Mary did. After we finished, my beautiful wife said that this was the most fun she'd had in a long time, and by Grace's smile, the same was true for her. This is what I want to give Grace and Mary every day. Big experiences are awesome, but it's the little stuff that makes the difference. It's the day to day joys of life that make it worth living. I hope I never forget the things that really matter... like making forts.


Monday, February 23, 2015

Back To School

Kyle and I went back to high school today, which is something I swore I'd never do!  However, today's visit did not include math homework, pickleball in PE or English essays. So, I agreed to go.  After all, this visit was all about Grace.

Kyle, Grace and I went back to school to talk to students at Morrisonville High School.
Several weeks ago, Janet Walch of Raymond, a science teacher at Morrisonville High School, contacted Kyle to share with him that she and her students were studying genetics.  She had been talking to the students about Grace's diagnosis and asked if she could share Grace's photo with the class.

Kyle responded that we could do her one better, we would bring Grace to meet her students in person.  It took a little finagling with snow days and legal holidays, but we scheduled a visit on Monday, Feb. 23. 

Kyle is talking to the students, and Grace is charming the crowd, as usual.
It was a great day to go back to school, and I have to admit, we even arrived early!  That's quite a feat for those that know us (and Grace's preschool teachers should probably not count on it for future days).  But since we were a few minutes early, Janet took us to meet some seventh and eighth grade students who had been collecting money for the INAD study.  They presented us with a canister that had Grace's photo on the front, and Grace even gave them one of her biggest smiles. Just by themselves, the middle school students raised over $100 for the study.  We are so truly blessed.

Then it was time to meet the high schoolers to share Grace's story.  Since several classes of students were interested, they set up the library for our visit. Grace had the place of honor, a big green bean bag chair on top of a table.  She sat there the entire time enjoying the treats the kids had for her, and I have to say she relished being the center of attention. Grace got a huge MInnie Mouse bag with new baby dolls, Smarties, suckers and a singing Minnie Mouse microphone that was her favorite.  

Grace was thrilled to be part of the presentation today, and especially loved her new Minnie Mouse microphone.
After all the students came in, Kyle and I had the chance to share our story from the very beginning, talking about different doctors, genetic testing and therapies.  The kids were very attentive and asked lots of really good questions.  They have been researching INAD, and really knew a lot about Grace's diagnosis.  

Most of all, they were excited to meet Grace.  After talking to the students, we posed with them for a group photo, and Grace absolutely loved when the kids came over to talk to her.  She just smiled and smiled. And we made sure that all the students had their own "Gracelets."

And to top off an awesome morning, the Morrisonville High School students and staff had also collected funds for the INAD study.  The sophomore class donated $200 and the juniors and seniors each donated $150.  From the junior high to the high school, they contributed nearly $950.  Talk about amazing.  

We were welcomed to the library by this beautiful sign.
We were so honored the students and teachers wanted to share in our "Grace Filled Journey," and hope we have the chance to go back again sometime.


Finding The Formula To Happiness

"When life gives you a riddle
But won't give you a clue,
And solving it yourself
Is way too hard to do,
Well you may find that the answer lies
Right in front of you."

Last November, life gave us a pretty big problem in finding out that Grace had a neurodegenerative genetic disease. While that problem sort of still seems insurmountable at times, Princess Sofia was right, the answer was right in front of us.

Grace got a Disney Junior CD for Christmas, and this catchy song keeps me singing along whether or not Grace is with me.  "Friendship is the Formula" comes from the Disney Junior show Sofia the First, a princess with a big heart for friendship

"If you have something tough to do,
Just gather up a friend or two.
‘Cause friendship is the formula,
Just me, plus you, and you."

After Kyle's column ran in December, we found out just how many friends that we truly have, from Montgomery County and beyond.  In the first few days after it ran, we got dozens of notes, e-mail messages and even phone calls to tell us people were praying for us and would support us every step of the way.

Grace got cards and stickers in the mail, and we got such special cards from all over the country. I have always loved getting mail, so it was so much fun to go to the mailbox each day to see what was waiting for us.

One friend made a very special gift just for me. She crocheted a prayer shawl, and wrote a note explaining that she made it with soft yarn and prayers. The note also talked about the colors she chose and what each one meant. Red is for love, courage and warmth, maroon is for bravery and strength, magenta is for spirituality, brown is for steadfastness and purple is for truth and wisdom. Every time I see it, it serves as a special reminder that so many people are praying for us.

Shortly after the first of the year, mom and dad ordered the purple "A Grace Filled Journey" prayer bracelets, and we have so enjoyed seeing the photos of people wearing them, and knowing all those people are keeping us covered in prayer.
And after showing us love with your prayers and your kindness, Montgomery County stepped up in a big way, with your donations.

After the first of the year, we joined a campaign called "ICan for INAD," started by other families whose children have been diagnosed with INAD. They may be few in numbers, but they make up for that in heart and big dreams.

We are trying to raise $150,000 over the course of the next two years to help fund a study, practically in our backyard at Washington University. Kyle and I were fortunate enough to meet the researcher in person. He shared with us how he came to study INAD, as well as his upcoming project, which he is very optimistic will help to find treatment options for INAD kids.

In less than two months, our friends and family in Montgomery County (and beyond too) have helped us to raise nearly $10,000 that will be added to the funding that other families are collecting. Talk about humbling.

As we sat discussing the study with the researcher, I don't pretend to understand much of the science he talks about, but I know that we can help raise the funds to keep it going. So many of you have already helped, and other fundraisers are in the works as well.  Your generosity continues to inspire us, and together, we can!

You see, when you have something tough to do, just gather up a friend or two. Just me, plus you, and you. We thank each and everyone of you who have joined us on this "Grace Filled Journey." We couldn't do it without you!


Sunday, February 22, 2015

A Not-So Chance Encounter

As we walked through the halls of one of the research buildings at Washington University on Friday, Kyle and I couldn't help but be a little overwhelmed.  Partly, because we were sort of lost in the building, and partly because we had a chance to meet the man that just might change our daughter's life.

Dr. Paul Kotzbauer has just begun a research study on treatment options for INAD kids, funded directly by families affected by this disease.

Once we found the right floor, Dr. Kotzbauer met us in the hallway and led us to a conference room, where we sat down to talk.  I was so nervous that I had trouble even picking a chair to sit in.  But he was very kind, and it was an awesome visit.

Of the approximately 25 INAD families worldwide, we feel very fortunate to live extremely close to Washington University, only about an hour's drive from our home.  In correspondence by e-mail with Dr. Kotzbauer, he expressed an interest to meet with us if we were ever in town.  All of Grace's doctors are in St. Louis, so we are there fairly routinely.  And although we didn't have Grace with us on Friday, we promised to bring her back with us for a visit soon so he could meet her as well.

As we sat down to talk, he asked us a bit about Grace, and we shared our story.  I think I've told it so many times now, I sound like a broken record.  However, he was very interested in all that we had to share.

Then we had a chance to ask some questions too.  My first question was how he ended up studying INAD, such a rare disease that affects so few children.  He told us his story and his history, which was very fascinating. He graduated from Washington University and is both a clinical neurologist (who cares for older people) and a researcher.  That was his goal all along to merge both things into his career.

Dr. Kotzbauer told us that he has always been intrigued by neuromuscular diseases, in particular Parkinson's. His studies with Parkinson's eventually led him to work with Neurodegeneration with Brain Iron Accumulation (NBIA) and Dr. Susan Hayflick.  Eventually, his studies led him to INAD.

After he completed a fellowship at the University of Pennsylvania, he returned as a faculty member at Washington University, where a couple of his peers were already studying INAD and even had mouse models set up.  He explained some of the other studies he's done and why they haven't worked out.  He also shared his new proposal with us, which involves screening already approved FDA drugs and their use in the treatment of INAD symptoms. He expressed his optimism for the study as well.

As a group, the INAD families will have to raise about $150,000 over the next two years to fully fund the study.  He explained that most of the cost will be used for a post-graduate fellow's work.  I kind of chuckled and said that labor is always the most expensive part.  

But the best news was, that he told us the study could begin with a contribution of just $10,000, which our group has already surpassed.  So, as we left the conference room, he told us the study had pretty much started.  

We are so excited about the prospect of this study and what it could mean for Grace and the other INAD children.  Kyle and I are SO grateful to everyone who has already contributed to this study and helped us to get it underway.  Be on the lookout for other upcoming fundraisers, including a 5K in Hillsboro on Saturday, Sept. 5.

And for those of you who have been faithfully praying for us, please keep this study and Dr, Kotzbauer in your prayers.  We know that God has a plan for Grace's life, and we are willing to follow wherever it may lead, but this just might be that miracle we've been praying for.


Tuesday, February 17, 2015

A Slam Dunk

We stood in the middle of the court in the Hillsboro High School gym tonight, and I couldn't help but tear up a little as the entire crowd stood up in support of our little family.  It was our first-ever standing ovation.

In my high school days, I was never an athlete in that gymnasium. I never took the court for the volleyball or basketball teams.  I did play tennis all four years, although it's safe to say I was not much of a star athlete. However, Kyle once dug out my MVP trophy from my senior year and put it out on our piano as our family's greatest sporting achievement. I think he's pretty proud of it.

Grace and I cheering for the Hiltoppers in tonight's game!
But tonight was different. Before the start of the game where the Hillsboro Hiltoppers took on the Southwestern Birds, the announcer invited us to midcourt for a special presentation. The five Topper seniors brought Grace a basketball, signed by all the players and coaches, and Coach Vanzo presented us with three team t-shirts from this season. Fittingly enough, their motto this year was "Finish the Journey," and they wanted us to have them.

Then, it was Grace's turn to shine. Senior Dylan Miller took her to the rim, as the other seniors held the ball up for her.  She wasn't quite tall enough to get the ball into the rim, but the crowd erupted in cheers just the same.

The senior Hiltoppers (from the left, Cody Caulk, Dylan Miler, Dylan Gray and Brenden Meier - not pictured is Koby Lemon) gave Grace her chance to slam dunk before the start of the basketball game.
Although we hope and pray for a miracle with each and every breath we take, we know there's a good chance Grace may never have the chance to attend Hillsboro High School, let alone play sports. It's so humbling the way that our communities have embraced us and surrounded us with love.

As we walked off the court, two young boys were talking to each other. One looked up at the other and said, "isn't she lucky?" referring to the fact that Grace got a chance to "play" ball with the seniors. It's kind of ironic that he thought she was the lucky one, considering she may never be able to walk or talk.

Held up by the Toppers, Grace gets a chance to make a "slam dunk!"
However, as we stood in the middle of the gym tonight, looking up at an entire gymnasium full of people standing up for our Grace, we know that's true. She's truly the lucky one. Lucky to be surrounded by family, friends and communities that love and support us. Lucky to have the chance to go to preschool with her friends. Lucky to have therapists taking such good care of her (and of her mom and dad too). And lucky that God chose her to carry such an important message about learning to enjoy life one day at a time. 

And that's what you call a real slam dunk.


Friday, February 13, 2015

Happy Girl

Oh watch me go, I'm a happy girl
Everybody knows
That the sweetest thing that you'll ever see
In the whole wide world is a happy girl

The Martina McBride song, "Happy Girl" came on the radio while I was cutting up celery and green peppers in the kitchen tonight for dinner.  It's always been one of my favorites, perhaps because of its great message. And definitely one I needed to hear tonight.

I haven't exactly been a "happy girl" this week.  Not that it's been a bad week, but I caught myself being sad about Grace's diagnosis and struggles.

I caught myself wishing that my problems were figuring out how to get crayons or markers off the walls, trying to teach her to share with others or even hearing her say that she's mad at me when she doesn't get her way.  Because somehow, someway, I think I could solve those problems.

Instead, this week, I find myself trying to juggle how to get Grace to two sessions of speech therapy, two sessions of physical therapy (one is an hour from our house), and three days of preschool.  I had to figure  out how to try and get her to sit up straighter in her chair and in the bathtub.  I have to call equipment dealers to set up appointments for MORE equipment in my home, and then find a place to put it.  

And somehow, someway, I'll figure out the answer to those problems, even if I don't want to.  But what tugs at my heart is a problem I can't solve: Grace's diagnosis has no treatment.  

Most days I can make peace with things and have faith in God's plan for our lives, even if it looks nothing like the plans I made.  I trust God has His reasons, even if I don't understand them.

So, I'd been having a pity party for myself this week and our situation.  The song "Happy Girl" came on the radio tonight, and reminded me that "the sweetest thing that you'll ever see in the whole wide world is a happy girl."  And I get to be the mom to the happiest little girl in the whole wide world, every day.  Her smile and laugh challenges me to be that very same "happy girl" just for her. And find ways to be happy in ALL the little things.

Today after physical therapy, Grace and I went shopping with my mom, and just happened to find some cute little Minnie Mouse shoes. When we first found out that Grace would need AFOs (ankle foot orthosis) braces, I was sort of crushed.  It broke my heart to walk down the kids' aisles in the shoe store and see all the cute little sandals and dress shoes that her braces just wouldn't fit in.  We ended up with a pair of "skater" tennis shoes that were wide enough for the braces, and she wore them with everything, even dresses.

For awhile, I figured that someday she wouldn't need the braces, and she and I could shop for fun shoes again.  While that may not be the case, today, we found another little reason to smile.  I just happened to see these darling Minnie Mouse shoes in the clearance aisle with a long strap that goes across the top, just long enough to go over her braces.  I think she and I both smiled when we put the pink Minnie shoes in the cart.  

Grace's cute new Minnie Mouse shoes
I can't wait for her to wear them for the first time, and I hope they will serve as a reminder to me to smile and laugh and be the "happy girl" that Grace is each and every day.


Monday, February 9, 2015

Serving For Grace

I love my job. Mainly because I get to tell stories that are important to me. But now I have another reason for my love affair with Montgomery County athletics. Since we shared our story about Grace’s battle with INAD, I have had dozens of people come up to me at games and tell me that they are praying for me or that our journey touched them.

The even crazier thing for me is that it’s not just individuals that have lent their support to our little girl, it’s teams. From Coach Matt Millburg and Lincolnwood boys basketball team giving Grace a signed ball from the alumni tournament to Coach Jason Burke and the Hillsboro boys soccer team making a donation for the research project at Washington University to Coach Bret Tuetken, Coach Bob Allen and the Hillsboro girls basketball team making Grace an honorary Lady Hiltopper, it’s been overwhelming the support that we have received.

The latest instance of this was tonight at the Lincolnwood Junior High volleyball game against Christ The King. I have a soft spot for the Lady Knights because my cousins, Kayley and Kensey Armour, play for the eighth grade team and have always loved Grace like she was a sister. The twins were some of the first ones to get the “Grace Filled Journey” bracelets and not long after they got their bracelets, they came back to get “Gracelets” for the rest of the team.

Mary, Grace and I with the Lady Knights of Lincolnwood Junior High. Just an awesome group.
All of those Gracelets were on display tonight as the team honored Grace with some new Lincolnwood gear, a Cinderella Barbie, some orange glow bracelets and an Disney read-along CD. As awesome as that was, Coach Kimberly Denney, like myself a Lincolnwood alum, and the Lady Knights one upped themselves with their support of the INAD research project.
All smiles with the Lady Knights
The team’s “Serving for Pizza” game is now called “Serving for Grace” and the money will go to help support the research project, which Mary says could start within the next few months. Tonight alone, the game raised $150 through donations from the Lincolnwood and Christ The King fans. Even if it doesn’t raise another dime, that is an awesome amount and will be put to good use at Washington University.
Grandma & Grandpa Herschelman, Grandma & Grandpa Galer, Aunt Mikaela, Great-Grandma Armour, Uncle Pat, Aunt Angie and Cousin Katelyn were all in attendance to watch Kayley and Kensey (and Grace) at tonight's game.

Like I said, I love my job and I have found out over the last few weeks that even though they may be wearing Lincolnwood, Hillsboro, Nokomis or Litchfield jerseys, just about everybody seems to be on Team Grace. 
After the game with the Armour girls and Herschelman girls.