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.”

When asked what made her special, she answered, “I get to learn to read Braille, and one day I’ll get to have a Seeing Eye dog.” Not have to learn Braille, but get to!

Memories flooded back to me from a short year ago when I cringed in fear at the thought of a child on the playground telling Christiane that one day she’d be blind, and all the things she wouldn’t be able to do because of it. But instead, just a year later, she, in her own words, was announcing her destiny to 1,000 people and claiming her own fate.

I flashed back to our homework experience earlier in the week, and it occurred to me that the same strong will and independence that have exasperated me so many times are also incredible gifts. I think God often uses our children to teach us something about ourselves and to complete who we are. My conventional way of instructing, organizing and fitting everything into a neat little box doesn’t work with everyone. I realized in order to relate to Christiane, I was going to have to change my approach – I am the one who has to adapt. Perhaps God uses people who challenge us the most to cultivate love and acceptance instead of control and dominance. In no way do I want to squelch her spunk and fiery little personality because her strength of character, courage and confidence are the very things that will serve her so well on the road ahead. Only God knew that when He created her and, of course, He has done it perfectly.

The Austin American-Statesman recently featured a front-page story about the Benson family and the Foundation’s efforts to eradicate Batten disease.

Click here to read more.

Bio-IT published a story highlighting the Foundation, its partnership with the National Center for Genome Resources, and its efforts to develop a carrier screening test for 437 devastating genetic diseases that affect children.

Click here to read more.

The Herndon Family and the research funded by the Beyond Batten Disease Foundation are featured in the latest issue of Shine Magazine, published by Texas Children’s Hospital.

Click here to read more.

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.

I read a legend of an Indian tribe that was plagued with sickness.  The old wise medicine man had announced that the only hope for this dying community was for the chief to sacrifice his only daughter.  The chief couldn’t bring himself to carry out such a horrific assignment and the tribe continued to perish.  At last, the man to whom the chief’s daughter was betrothed fell sick and was dying too.  In an attempt to save the man she loved, the girl hiked a day and well into the night to a towering cliff and jumped to her death.  The next morning, the entire tribe had been healed and the chief, along with the girl’s fiancé, fearing the worst, struck out to find his daughter.  They found her lying at the base of the cliff and the grief-stricken father raised his arms to the heavens begging the Great Spirit to memorialize this spot.  All at once, a waterfall burst out from the top of the cliff, cascading down to the scene below.

I could hardly believe what I had read because just minutes before, I was marveling at the beautiful images of waterfalls that God was showing me in the clouds.

This experience reminded me that although we don’t know if Christiane’s life will be sacrificed, we do know that it has purpose and meaning, and that God is using her in a mighty way.  Christiane is the inspiration for the development of Beyond Batten Disease Foundation.  Because of her, our subsequent development of a carrier-screening test for Battens and hundreds of rare diseases will save countless others from experiencing the same devastation.

Waterfalls will forever have new meaning for me.  They are a constant reminder of God’s purpose, endless love, and refreshment for the soul.

If God can use a seven-year old with a terminal illness in such a profound way, I wonder how he can use me?