The Kindness of the Lion and the Little Red Bird

I spent some time studying Grace's bookshelves this week, trying to decide just which book to write about in this month's column.

It's no secret that Grace loves when we read to her, so she has quite the collection. Books of every shape and size grace her shelves, and right now, some of her favorites are board books that she can turn the pages.

Some weeks, we shuffle through a variety of books each night before bed, and other times, we read the same favorites over and over and over again.  For the most part, Grace is content to lay next to you and just enjoy the story.

As I looked through a stack of books waiting to be put back on her bookshelves, I found one called "The Lion and the Little Red Bird," both written and illustrated by Elisa Kleven, who lives in California. 

This book is one given to Grace before she was even born by a former copy editor at the newspaper, Betsy Fingerle. Just before Grace arrived, she and her family moved out of state, but she gave Grace a gift of several books that were always favorites of her children.  I had never come across any of these titles before, but they are all fabulous, and have been read over and over and over again.
In this particular story, a red bird happens upon a lion with a bushy green tail, as green as the forest.

The bird is intrigued, and just looking at the bright green tail makes her very happy. Determined to find out what makes the lion's tail so green, the bird follows him and asks, but the lion doesn't understand the bird's language.

He simply hears chirping, and smiles at the bird, enjoying its company. Throughout the day, the bird follows the lion, as it wanders down to a field of orange flowers, chases butterflies and ends up home at his cave for the night.

The bird wanted to see the lion's green tail again, so she made herself a bed in a tree nearby, waiting for the lion to emerge from his cave. However, in the morning, the lion's tail isn't green anymore, it's orange. And once again the bird is intrigued. She asks him how his tail changed from green to orange, but the lion simply smiles.

For several days this continues, as the lion's tail changes to blue and to red, and the bird continues to follow the lion and asks the same question every day. "The lion just smiled, thinking how much he liked the chirping bird's company."

One day, the lion steps on a thorn, and the bird helps him pull it out. Another night, a storm comes, and the lion comes out of his cave to rescue the bird in its nest and bring him into the warm and cozy cave.

Once inside the cave, the bird discovers that the lion has painted pictures on the walls of his cave, using his tail in a variety of colors. That night, he dipped his tail into a bowl of shiny red berry juice and painted a picture of the bird.

"The bird sang while the lion painted. She sang a song without any questions, full of color and joy. The lion had never heard anything so unusual and so pretty. Just listening made him happy."
So often, we let our differences come between us. We think that just because we can't communicate with someone, it means we can't get to know them. The best part of this story is that the two main characters embrace their difference and learn to be there for each other in good times and in bad times, no matter their differences.

Some days it's hard as parents of a non-verbal child. Grace can't tell me what she wants or what she needs. She can't tell me what she wants to eat for lunch or even what shirt she wants to wear. However, she can show me when she's happy, and believe me, she finds a way to let me know when she's unhappy. 

It's that same smile that communicates Grace's love for us and for those she meets. We may not all speak the same language or share the same religious beliefs, but we can all get behind the common language of kindness and compassion, and above all, loving one another. I may never get to hear Grace say, "I love you, mommy," but when her blue eyes light up her face with the biggest smile you've ever seen, I already know.

If we can all find kindness like the lion and the little red bird, well, the world would certainly be a happier place.

MLH

A Tri-ing Experience

Life gives us opportunities. When Grace was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) in November 2014, life gave us the opportunity to make a difference in this world through our quest to cure this terrible disease which may someday take her from us. Life has also given us the opportunity to share our faith and to show a positive outlook, as hard as that may be some times. There are days that aren't 100 percent perfect, but we do our best to try to realize how blessed we are to have Grace in our lives.

On Friday night, March 25, we had the chance to meet Lisa Roberts, someone else who has had opportunities showed to her, albeit a different kind. Lisa is a Gillespie grad who then went to SIU-E, before setting in Tucson, AZ after getting her masters from the University of Arizona. She's also a professional Ironman triathlete and one of the top female competitors in the world. For those of you not familiar with triathlons, that's the race that you swim, bike and run further than I usually like to go in a car. It's a grueling test of mental and physical toughness that only a select few even attempt, let alone finish. And Lisa's one of the best at it.

Family photo op getting to meet Lisa Roberts the night before Dualthon.

She was in town for the Litchfield Duathlon, a run-bike-run event that benefits the Litchfield High School cross country teams. When I got the press release for the race, it mentioned that Lisa would be doing a question and answer session on Friday night during registration pick-up for the event the next day. I immediately thought that this would be a great opportunity for us to give Grace another experience. We like to introduce her to people who have done extraordinary things, especially those with connections to our area. It's a way to get our story out to a new audience, but it also serves as a source of inspiration to me. It reminds me that great things can come if you take chances and take advantage of the opportunities that God gives us.

Lisa gave Grace won of her Timex Ironman visors as well!

So we made our way over to Litchfield to hear Lisa speak. It was an awesome experience for runners and non-runners alike. Her dedication to her sport is awe inspiring and it makes me want to continue to do what we do with Grace, which can be just as daunting as the 2.4 mile swim, 112 mile bike ride and 26.2 mile run that comes with every Ironman. What also struck both Mary and I was her willingness and enthusiasm to answer any and all questions. Whether it was a novice looking for a challenge or an experienced triathlete, Lisa seemed to really care about the question and did her best to help out, something not everyone would do.

After the Q&A, Mary and I went up to introduce her to Grace. After waiting our turn, I introduced myself (we had briefly corresponded by email when I was doing up some publicity for the race) and Grace. Mary and I told her a little bit about our daughter and our quest to give her as many experiences as possible. We also spoke about Ainsley's Angels of America, which Lisa said she had heard of, and how the group's namesake had INAD just like Grace. Following a photo with Lisa and her bike (which is nicer than about half of the cars I've owned), we gave her a Gracelet and she gave Grace a visor from her sponsor, Timex. It was an awesome evening and one we won't forget.

Lisa posed for a photo with us after she was the first to cross the finish line!

We kind of thought that would be the end of this particular opportunity, but like many things in life, plans change. With two Easter Egg hunts on our assignment list Saturday, we weren't sure that we would make it to see the race itself, but after Friday night, we made it a priority. We got up early (for us) and made it to Litchfield in plenty of time to see the competitors take off. Again, it was awe inspiring. These athletes weren't doing this for money or stardom. They were doing it to push themselves, to be the best they could be.

While we weren't able to stay until the very last person crossed the finish line, we did get to see my Aunt Kim make the transition from the first run to the bike, and we got to see the top finishers stop the clocks. Lisa would be the first one to cross the finish line, beating another racer by less than a few feet, and after she caught her breath, we brought Grace over for another hello. We were touched beyond words when she rolled up her sleeve and showed us that she was wearing her Gracelet for the race.

Lisa shared this photo wearing her Gracelet after the race.

I'm not sure if we'll get too many more chances to meet up with Lisa, but she'll always part of our Journey now. One of the coolest things about these opportunities for local experiences that reverberate on a national level is that we are able to follow our new friends, even if we may not cross paths again. It's like how we watched Dylan Miller and North Dakota State this basketball season after getting a chance to go down to the Bison locker room. Or how we'll probably watch more Vikings games this year than in every previous year combined after meeting Minnesota lineman Zac Kerin at the Moonlight Y. I've watched the Kona Ironman a handful of times over the years, but I'm sure this year will be different. This year, we will definitely have somebody to root for.

Classroom Lessons In Life

Although this blog is a little belated, this month, Kyle and I went back to school at Washington University in St. Louis. But fortunately for us, we were on the other side of the studying part!

Shortly after Grace was diagnosed in November of 2014, her geneticist, Dr. Beth Kozel, asked if we would come and speak at a lecture she was giving to first year medical students at Washington University. The lecture was on the use of the whole exome sequencing test, which was the one used to determine that Grace had INAD.

When she first asked us, she wrote, "To become good doctors, students need to learn how to approach conversations like this, and having insight from a family like yours would be wonderful." We were extremely humbled, and anxious to share our story.  

I keep in touch with Dr. Kozel from time to time by e-mail, and she is now working in Washington D.C. with the National Institute of Health. She's been a really great resource to our family, and even keeps her gracelet in her new office.

Over the winter, she e-mailed and said that even though she was out of the area, she would be coming back to St. Louis to give the lecture on the whole exome sequencing test, and asked if we would be willing to speak again.  It took us about two seconds to say we would be honored to come back.

Selfie at Wash U after we spoke during the lecture.

This year's lecture fell on Tuesday, March 15, which just happened to also be primary election day in Illinois.  We got up bright and early to be there for the 8:30 a.m. lecture, although we didn't arrive until closer to the time we had to speak at 9:30.  There were probably almost twice as many students there this year than last year, and it's a lecture that Kyle and I always enjoy learning more about.

Dr. Kozel talks about how families end up in the situation where this test is used, but also talks about the ethics of genetic testing, and how as science and technology advance, it also increases the need for ethical discussions of how it is used.

In our particular case, the test looked at all 20,000 of Grace's genes (and ours too), to determine that both Kyle and I had passed on a mutated copy of the gene, PLA2G6, which causes INAD.  It's never easy to sit in a doctor's office while they tell you your child is dying, and there's not anything you or anyone else can do to stop it. However, as hard as that day was, I will always remember the compassion Dr. Kozel showed us, and that she told us there would always be hope.

Kyle and I enjoy being part of her lecture because it gives us a chance to talk about our experiences and encourage future doctors to have that same compassion and kind bedside manner. To some, Grace may be patient XYZ, but she's our whole world.  

After we talked for 20 minutes or so, we had a chance to answer student questions, and talk a little bit about our fundraising efforts for the research study, which also happens to be right there at Washington University.  When the students were dismissed, we had several stop by to talk to us and thank us for coming and sharing our story. Kyle and I both really feel that it's our honor to be asked, and we are so grateful for the opportunity.  

We forgot to take a photo of Dr. Kotzbauer with his plates, but Grace was pretty excited about them.

We had one more stop to make before heading for home.  As part of the special license plate fundraiser, Kyle and I ordered a set for Dr. Kotzbauer, who is leading the research for treatments for INAD.  Since he lives in Missouri, he can't actually put them on his car, but he was delighted to have them, and said he would proudly display them in his office.

He gave us a brief update on the study, which continues to make progress and is nearing its one-year anniversary.  It seems so hard to believe it's been nearly a year since I collected all the money we had raised to that point and sent $8,000. Now, we have raised over $100,000, and are pleased to be able to continue our efforts to #beatINAD.

We have been given so many amazing opportunities on this "Grace-Filled Journey," and we are so grateful to Dr. Kozel and her students for letting us share our story. We know you will all be great doctors someday.

MLH