Sunday, February 17, 2019

Happy 2nd Birthday, Charlotte!

The day before her second birthday, Charlotte came into our bedroom first thing in the morning, all by herself. It was the first day she had figured out how to crawl out of her crib, and after startling me at first, it was cute to see her so proud of her accomplishment.

Today, Charlotte Grace Herschelman turns two years old, and it's been immensely fun to watch her accomplish so many things. From her first "da da" to picking out all the characters on the Mickey Mouse Clubhouse, we have loved listening to her learn how to talk. Kyle's favorites are "snicky" instead of "stinky" and "Goosey" instead of "Goofy." I told Kyle that one day I will miss trying to figure out all the things she is trying to say!

February 2019
She's also mastered so many other skills in her first two years, walking and then running, picking out her favorite toys to play with and giving hugs and kisses. Most of the time, Kyle and I just sit and watch her play, in awe of all the things she learns each and every day.

In some ways, as excited as we are that Charlotte is meeting all these milestones, it's a bit bittersweet at times. Charlotte has already far surpassed any of the skills Grace ever had when she was younger. Grace had a handful of words (my favorite was always "ma ma") and she knew all her animal sounds. She was able to cruise the furniture for a time and walk in a reverse walker, but she was never able to walk on her own. And that's just the tip of the iceberg. INAD has stolen so many things from her that she's not even able to sit up on her own anymore.

But INAD hasn't stolen her ability to smile, and when she smiles at Charlotte, it seems that my world is complete.

February 2018
I never had a sister, but I have always heard about the special bond between sisters. And it would seem that Charlotte and Grace have formed that bond already. Just yesterday, Charlotte crawled up on top of Grace just to give her a hug and a kiss. It was about the sweetest thing. Charlotte loves talking to Grace, and in true big sister fashion, Grace laughs anytime Charlotte gets scolded for something. That little bit of normalcy never ceases to make me smile.

Accepting that Grace has INAD means accepting that our dreams for Grace's future have changed. When Grace was a baby, we wondered what she would like to do when she got bigger. She always loved playing with soccer balls, and we thought she might like sports. We wondered if she would like school or become a writer someday like Kyle and I. Sometimes it's hard to accept when dreams change, but we also know that Grace has already made a huge impact in the world.

February 2017
The birth of Charlotte two years ago brought up all those same types of questions. We wondered what she will be like someday. Will she be the head of her class or the star of the basketball team? Will she want to join 4H or Girl Scouts? If the past two years are any indication of her determination and perseverance, I would say Charlotte will be able to do anything she puts her mind to. And I'm okay with that. I've also seen her compassion and empathy for her sister, and it's my hope that whatever she decides to do in this world someday, that she does it with kindness. That would be my greatest dream for her.

The past two years have flown by so quickly, and it seems like Charlotte has already been part of our family forever. We continue to be blessed by her spunky attitude and caring heart. We can't wait to see what the future holds for her.


Saturday, February 16, 2019

Brighten Up Rare Disease Day

This year, on the last day of February, Kyle and I will celebrate being married for ten years. And while Feb. 28 will always be a special day to us, when Grace was diagnosed with iNAD, it became special for another reason.

The National Organization of Rare Diseases marks Feb. 28 as Rare Disease Day. The main objective is to raise more awareness for all types of rare diseases all over the world. Why is this so important? Because according to the Rare Disease Day website, one in every 20 people will live with a rare disease at some point in his or her life. And many times there is no cure for these rare diseases that often times go undiagnosed.

This is our fifth Rare Disease Day since Grace has been diagnosed with INAD. And we've done a variety of different things over the years, sharing photos and videos to social media and working to get our awesome communities involved in our efforts.

Last year, we launched a Beat INAD coloring page that Kyle and I designed. We offered the coloring sheet to schools, and we were overwhelmed to see all the coloring pages all across the county. Kids and grown-ups alike shared their artwork helping us to raise more awareness for INAD.

And last year's coloring page was neat, but this year, we were blessed to have graphic designer Danielle Seago of Doodlebug doodle an awesome coloring sheet for us with the Princess Grace logo. Seriously, it's awesome, and you won't want to miss a chance to color yours.  Special thanks to Danielle for donating her time to our project, and you can support her work by purchasing some of her children's books on Amazon (Marvelous and Kind Kloey and Faith Over Fear).  

We hope that everyone loves the new coloring sheet as much as we do. We will include a copy on our Facebook page that can be downloaded and would be more than happy to email a copy to anyone interested. Feel free to share the coloring sheets with anyone you think who would like to help us raise awareness, and make sure you share the finished product with us on Facebook, Twitter or Instagram.

And don't forget that Rare Disease Day is Feb. 28. Every single person can make a difference in the life of someone with a rare disease.


Tuesday, February 12, 2019

The Grace Race Is Back

It’s official! Thanks to a vote by the Hillsboro City Council tonight, the next Grace Race is officially on the books for Saturday, Aug. 31, 2019!  And we hope you will mark our calendars to join us and help us once again raise much-needed funding for INAD research!

Grace hopes you will join us for the Grace Race on Aug. 31!
Plans are still being made for this year’s event, but it’s always such a blessing and encouragement to us to see so many of our friends, family and our community step off the race line for Grace. And while we truly wish Grace could be taking those steps herself, we are so honored and humbled for all those who run and walk in her honor.

The first A Grace-Filled Journey 5K and one-mile fun run event was held in 2015, less than one year after we learned Grace had INAD. It was an idea by my brother and his wife, who are both active runners. I always tell people if they see me running, they should probably run too because it means something is chasing me!

But not John and Emily. They run nearly all the time, like even when they are home over Christmas break! And in the first year after Grace was diagnosed with INAD, Johnny pledged to run 1,000 miles in her honor that year. That would be the year he ran his first marathon, and he attached her photo to his race bib and wrote her name on his shoes, with a note that read he ran in her honor because he knew one day she would be able to run with him.

Johnny's shoes and race bib from his first marathon.
We know now that Grace is unlikely to ever take steps in a marathon, 5K race or even walk to school, but we continue to be blessed by all those who take steps in her honor each and every single day, by sharing her story and helping us to raise awareness for INAD.

This is the text he sent me on the day of his first marathon.

There were over 650 people who participated in that first Grace Race, including more than 150 who ran virtually in other parts of the country and the world. Big props to Kylie Walch for running her 5K in Myanmar and Kyle Stewart for making his trek in London, England. 

Then we skipped a year before planning the next Grace Race, and the second edition was held in 2017. At six months old, it marked Charlotte’s first Grace Race, and she nearly slept through the entire thing. Which is okay, because Grace slept through her entire birthday party that followed.

This time, we set a goal to have virtual runners in all 50 states, and thanks to our very dedicated friends and family, we made that goal too! That day, there was someone running or walking a 5K in Grace’s honor in each and every state in the country. We absolutely loved seeing all the photos on Facebook and Instagram.

Johnny gave Grace his first medal from the Marine Corps marathon.
Add that to the more than 500 runners and walkers who made it to Hillsboro, and we consider ourselves truly blessed to have so many wonderful people on our Grace-Filled Journey. 

The day always turns out to be a blur for us, but special thanks to our friend, James Ryan of NokoPhoto for taking photos at both races for us to enjoy in the days and weeks that follow the race. Watching the smiles of runners and walkers of all ages cross that balloon-archway finish line never fails to bring a big smile to my face.

The second Grace Race brought in $25,000 for Dr. Paul Kotzbauer's research.
We’re not exactly sure all the details of what this year’s race will bring, but you can bet it will be a special day for our family. And we hope you will save the date of Saturday, Aug. 31 and join us in Hillsboro or run in Grace’s honor wherever you are. I guarantee you won’t regret it.