A Mother’s Story

 

Photo by Catherine Sanderson | catherinesanderson.com
On March 28, 2008, my husband Craig and I received the devastating news that our daughter, Christiane had been diagnosed with a very rare neurodegenerative disease called Batten Disease. Batten Disease causes blindness, seizures, is physically and mentally incapacitating and is ultimately terminal by the late teens or early 20’s. Seven years later, it still takes my breath away to write all of that in one sentence.

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Possible

Have you ever wondered if you are relevant, significant, or if anything you do really matters? Sometimes I get moving so fast, occupied with my daily activities, and whirling in a million directions, that I wonder at the end of the day, if any of it really mattered…….does anything I do count?

I received a card in the mail the other day from Whitney, a childhood friend, and the cover read: “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible” – Francis of Assisi.

That gave me pause for reflection because certainly Craig and I know that Beyond Batten Disease Foundation was created by a “necessary” response to give hope to our child, Christiane. What came next was the “possible” with the creation of the foundation and the extraordinary contributions of our friends and community. While our destination is certainly to accomplish the” impossible,” what’s striking to me is how amplified that concept becomes when an entire community is simultaneously contributing to that phenomena.

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5th Grade Hope

Back to school always marks the end of summer with anticipation and excitement for a new season for children.  Even parents welcome the new routine. New beginnings abound for children of all ages and suddenly we find ourselves in a new place.  Kindergarten gives way to first grade, elementary gives way to middle school, and on it goes until our kids finally go off to college or into the real world and we wait breathlessly for the results of all of our hard work.

I once heard that raising children is like having a herd in a green pasture surrounded by a secure fence. They are free to explore and discover within the boundaries of the fence.  Every year, our job as parents is to expand their boundaries and responsibility so they can become more and more independent. The idea is to increase their limits and make room for their own decisions so they can discover success and failure, and learn to grow from those experiences.  Our job is not to control and dominate them, but rather to allow them the freedom of making their own choices as we continue expanding their pasture until they are capable of functioning independently and responsibly without the fence.

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Reciprocity

Mother Theresa once said, “ We are all pencils in the hand of a writing God who is sending a love letter to the world”.

In the wake of Run to the Sun, our fourth annual overnight relay through the Texas hill country, we received a letter from someone named Jack, whom I’ve never met.

In the letter Jack describes his experience of the event and his own challenge in the wee hours of the night as he ran his leg of the 90 mile trek back to Austin.

“I cannot stop thinking about the Run to the Sun……….Although this leg was extremely hard for me physically and emotionally, God told me not to give up and to keep running.  The blisters on my feet, the tightening pain in my hamstrings, calves and knees plus the feeling of distress alone on Highway 360 were all washed away by the thought of your family……….I admire and commend you for not giving up.  By fighting hard and raising awareness, God has used the Benson family to bring hope to others affected by orphan diseases.”

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Muddy Bogs and Steep Hills

Some say control is an illusion and if you want to make God laugh, tell Him your plan.

Have you ever tried to prepare for the unknown or anticipated a new situation or challenge and wondered if you had the skill set or fortitude to execute the task at hand?

Last summer, our family signed up for a 7 day overnight campout on horseback through the Teton wilderness in Jackson, Wyoming. At the time, it sounded like an exciting vacation and something totally outside of the box of our conventional choices. But as the date approached, I found myself wondering what on earth I had done! “This was MY idea” I reminded myself. I mean, I was a summer camper and absolutely loved adventures as a child…… but that was 35 years ago. What about the bears? How about taking a shower and washing my hair? What’s it like to sleep outside in freezing temperatures? Trying to prepare for the unknown was consuming and soon I found myself on the floor of my closet, cramming in a week’s worth of riding gear and “survival essentials” into a small duffle bag. Should I take the Icy Hot or Benadryl? Can I take the EpiPen and still have room for the bear spray? I was beginning to realize that the flurry I produced trying to anticipate every possible eventuality, weather condition or unwanted visitor from the wild was a futile effort. Finally, packed with everything I could think of (that would fit), I zipped up my bag…… and just to make God laugh, I forgot my toothbrush.

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Who Will They Be?

I remember a little boy when I was young who was handicapped.  I don’ t remember his name, but I’ll never forget the impression he made.  Walking for him required effort, his expressions were contorted, and the sounds he made when he spoke seemed involuntary and scary to me as a child.  I remember my mother shuffling us past him in the breezeway leading to the sanctuary at church.  I’m not exactly sure how I was reminded, but the basic message was to keep walking, and don’t stare, or make his family feel uncomfortable.  He was the only handicapped kid from my childhood that I remember.

I’m not sure where children with special needs went to school then, I simply never saw them.   How refreshing it is that times have changed.  I am amazed today to walk through the halls of Casis Elementary, to not only see these children fully integrated into school, but also to see them so fully embraced by the children who surround them.

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The Blind Vest

Have you ever wondered what it would be like if the whole world knew your pain? Would you feel exposed or liberated? Would you be embarrassed or relieved? Would others treat you differently? I frankly never gave it any thought until 3 weeks ago when Craig and I took the children to Colorado for their first ski trip.

We enrolled Christiane in a program called Challenge Aspen, where children with special needs are taught to ski. Her instructor, Chloe, had worked with children with all sorts of disabilities and turned out to be a perfect choice for Christiane. While Christiane is not totally blind, her vision is blurry with dark spots; she sees shapes and shadows and struggles to focus on objects up close. Chloe asked me how Christiane would feel about wearing a fluorescent vest that indicated she was visually impaired. At first I felt exposed and uncertain about drawing so much attention to Christiane, but the obvious necessity to alert other skiers that she was skiing with a visual impairment made it an easy decision. So off they went, in matching orange and green vests, with Christiane’s reading “Blind Athlete” and Chloe’s reading “Guide for the Blind.” I followed behind and watched in awe as Christiane began to trust her instructor as she was led down the slope holding on to Chloe’s pole that was extended horizontally in front of her.

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A Mother’s Story

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.

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A Mother’s Story

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

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I Wish

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.”

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