Photo by Catherine Sanderson |
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.

What I remember about the day of her diagnosis was the shocking numbness that seemed to freeze that horrific moment and every racing emotion as we fell to our knees in disbelief and horror. While we were on our knees we began to pray. Pray for strength, direction, comfort, and sustenance. The months that followed came with the incredible support and love of our family, friends, and community, and shortly thereafter Craig and I founded Beyond Batten Disease Foundation. The foundation has become a life purpose for us and a vehicle for virtually everyone we know who wants to do something to help make a difference to channel their talents, gifts and resources to find a cure.

Christiane’s diagnosis completely changed our lives and shifted how we viewed the world. It was clear that we had a choice of how we wanted to live life in light of this news. We could either crumble in sadness and defeat or we could embrace our new role and do something to try to make a difference.

The very first effect Christiane’s diagnosis had on me as a mother, was an immediate and automatic elimination of the superfluous fluff that filled my life. It was as if an automatic sensor sifted out anything that lacked meaning and depth, and simply pushed “delete.” I learned to be still and present with my children in a way I never had before and inhale every moment I spent with them.

I not only began to experience my children in a new light, but began to realize that God had also blessed my marriage by giving Craig and me a shared life purpose to not only care for our daughter, but also to help others through the work at our foundation. We began to experience the profound depth and unbelievable generosity of our friends and community in a way that we would never otherwise get to experience. The success of our foundation is entirely due to the compassion, pure love and sheer will of human kind to make a difference. To see up close the intuitive and passionate response of others to our own personal adversity is an extraordinary blessing. Everyone has pain and suffering, but God can use even the worst of circumstances to bring out the best in people. As we have said many times before; we have far more for which to be grateful than regretful.

I also realized that being the mother of a child with a terminal illness gave me a unique perspective and I began writing about my experiences. The unique perspective that emerged for me was not one of despair and hopelessness, but rather one of God’s incredible love and provision. I discovered that hope is a light that shines most brilliantly in dark places and that this was actually an incredible gift to unwrap and share with others. Writing has become an opportunity to share that gift and the simple truths that our precious children teach us every day. It is my hope that by sharing my stories and the light that I experience in my own dark circumstances that I will be able to encourage others to find the light that illuminates theirs.

What is the goal of the foundation and can you tell us about the success you have had to date? Our mission is to eradicate Batten disease and hundreds of other rare diseases like it. Today we are the leader for juvenile Batten research and have created a cohesive global research strategy. We have 30 key research projects currently underway as part of that strategy. Over the last 6 years, $14.6 Million has been invested in research by leveraging donations, co-funding and partnerships because of our efforts.

Our success is entirely due to every single person in our community who has shared their talents and gifts and have joined our fight to save our daughter, and so many others like her. Even though we have accomplished much in a short period of time, we still aren’t there yet!

What is the biggest piece of advice you would give someone else facing a devastating diagnosis of a child or loved one? In the face of adversity, I think the most powerful antidote is gratitude. I believe that focusing on the blessings in any unfortunate circumstance shapes our thoughts and ultimately creates our reality.

Originally published on the iGnite blog.

2 thoughts on “A Mother’s Story

  1. My Great-Nephew has the disease and it is so hard to see how he is. He is our Hero! His Mom and Dad have very strong faith in God and bless others and care for our little Hero with so much love! They pray thru every situation and we pray for all of them. We also pray for answers that will bring a end to this terrible disease. Thank you for what you are doing, even with your own child being affected. Prayers for you!

  2. My daughter has batten dease she is 11 and she is blind she’s bn blind since 2011 it scares me everyday… Everyday I have know idea when she’s gonna have a seizure. It scared me for life the first time… she goes to st Augustine school for the deaf and blind …..I love her so much words can’t express…..she’s my end of the rainbow that makes me smile better than gold ..,..she is my life …she’s changed my world …she is my world…she has a 14 yr old brother to that loves her very much she is spoiled ….for what I can give her

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