With the holidays approaching, the children and I have decided to decorate our front yard with characters from our favorite Christmas story…….Dr. Seuss’ How the Grinch Stole Christmas. Twelve years ago, my brother, John, made a Grinch who sat on the front porch at Christmas, and I remember all of the children being fixated on every detail, fascinated with his yellow eyes, bright green skin, and long fingernails. Every wrinkle of his face was animated with a grin that held the awful thought of his plot to end Christmas by stealing it away from the Whos. Every child imagined what it would be like to wake up with no presents or toys, and the Grinch would finally be satisfied that he had put an end to the noise and commotion of Christmas.
by guest columnist Missy Herndon
Three years ago, Missy and Wayne Herndon received the shocking news that their then 6 year old son, Will, had been diagnosed with Batten disease. Like the Bensons, the Herndons responded with a “knowing” that they had to do something to make a difference. Shortly after Will’s diagnosis, the Herndons created the Will Herndon Fund and joined BBDF to collaborate their efforts to fund research to find a treatment or a cure for their children.
The Torch of Hope
“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
On Mother’s Day, I received a poem from Christiane entitled “I Wish.” There was a picture of her at the top blowing on a thistle and written with a black marker in her own handwriting, the last line read, ”I wish that there was no more Batten.” I swallowed hard knowing that this was one of those difficult moments.
Two weeks earlier, Christiane and I had gone for a walk to the hardware store to buy some birdseed. It was the first time we had ventured out so far from home on foot, and she was especially delighted that we had successfully crossed such a busy street to get there.
On our way home we stopped at a friend’s house to visit. While we were there Christiane was introduced to a woman who kindly told Christiane that she had her picture on her refrigerator and that she prayed for her every day. Christiane had a puzzled look on her face and I guessed that she might be wondering why someone she had never met was praying for her every day. So when we left, I asked Christiane if she knew why that lady said that she prayed for her, and she answered “No.”
A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.
Some things our children say are indelibly etched in our memories, word for word. They make us laugh, their naive wisdom stops us dead in our tracks, or they reflect some unattractive part of ourselves we never knew they saw. For me, as I wrote about in the previous issue of this newsletter, it was Christiane’s answer when asked what made her special. She said simply “I get to learn how to read Braille, and one day I’ll get to have a Seeing Eye dog.” Not HAVE to, but GET to! I have thought of those words a thousand times, but mostly I have absorbed the concept of “have to” vs. “get to.” It has given me a fresh perspective on parenting and a summer spent every day with my children has given me the opportunity to adopt her philosophy. So swimming with the children has transformed from I’ll HAVE to wash the chlorine out of my hair, to I GET to dive to the bottom of the pool and see their faces close up when they pop up breathlessly. And, cooking has transformed from I’ll HAVE to pick egg shells out of the scorched scrambled eggs to I GET to feel her excitement and enthusiasm for success. Disciplining has morphed from I’ll HAVE to hear her whine and complain about an extra chore to I GET to see her mature as I watch her figure out how to unload the dishwasher unassisted. What a lesson she has taught me and I absolutely relish in the gift of “GETTING TO” experience my children in a way I never have before. It’s like taking a walk and slowly inhaling every fragrant flower, stopping to watch where the butterfly lands, and feeling the sun on your shoulders and breeze in your face. There is a consciousness in parenting that is often not intuitive, but so rewarding if we take the time.
This summer, I spent some time hiking alone early in the morning while our family was on vacation visiting a remote island. It rained briefly almost every day and the weather changed quickly.
One morning, I climbed a ridge with a path of rocks that led me almost straight up like a staircase winding through a jungle where there were swarms of black butterflies, exotic birds with melodic whistling voices, and an occasional iguana perched on a rock. The ground was blanketed with wet leaves and shaded by bright green tropical trees and every so often, there was a break in the canopy, revealing spectacular glimpses of the view below.
When I reached the top, I was welcomed by an absolutely breathtaking view of a blue sky full of white puffy clouds, a turquoise colored sea below and other islands that reached into the distance. I had arrived at the highest point on the island and had a 360 degree view of utter paradise. I stopped to take it all in, and enjoy the peaceful surroundings and pray.
A Mother’s Story, by Charlotte Benson
As Christiane and I sat doing her homework one afternoon, hopelessness mounted inside of me as her strong will, independence and defiance reduced me to complete frustration. While fully rejecting my input on a first time attempt, she proclaimed “I already know how to do this, Mom. I’m going to do it like I like to do it.” I retreated to my room in defeat and I didn’t know if I’d ever be able to cope with her strong character. Only a few days later, I found myself praising God for her strength.
That weekend, Christiane was a first grade princess presented in the Helping Hands luncheon, a fundraiser for a children’s foster home in Austin. While each girl was presented on a stage, a bio was read of questions they had answered in their own words. I watched Christiane walk to the center of the stage in her organza white dress and rhinestone tiara, and was moved to hear her answers booming across the loud speaker.
She was asked, if you could invite any famous person to your birthday party, who would it be? She answered, “Monet, the famous artist, because he had low vision too.”
A Mother’s Story, by Charlotte Benson
As I stared out of the window on my flight from Baton Rouge to Austin, I prayed for my family and our future, and for Christiane’s healing. I watched rays of sunlight angle down from above dashing horizontal shelves of clouds and refracting the light into a cascading effect. Waterfalls, I thought. God has created waterfalls of light in the clouds and I wondered why.
When I finished praying, I pulled the blind down and turned to Craig sitting next to me in the middle seat. He had just finished reading the last pages of a book called The Shack. I asked him if he liked it, and what was his favorite part. He thumbed through the pages, said that it was all good, and that he wouldn’t know where to start. Then he turned to a chapter in the book and handed it to me to read.