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.
I never think of what I do in a day being amplified by what someone else may be doing while whirling through their day. I never think about how my seemingly small accomplishments may be contributing to a bigger picture and perhaps an incredible feat.
What a notion! When you have multiple people doing what is necessary, then doing what is possible, suddenly you have the collective potential to do the impossible.
Not only has that been the case with our foundation and its mission, but most recently, I have seen that same principle manifest itself in the culture surrounding Christiane. Batten disease is a neurodegenerative condition that causes seizures, blindness, cognitive and physical decline and is terminal by the late teens or early 20’s. There is currently no medical treatment or cure. What could one person possibly do to make that diagnosis better? You might not think there is much, but when you see the collective effort of individual people responding simply to a necessity by doing what is possible, you begin to then see what is nothing short of a miracle.
A couple of weeks ago, we had Christiane’s annual visit with her ophthalmologist to assess her vision and see what changes have occurred. Last year, we received the very good news that Christiane’s vision had only decreased marginally in one eye and this year her vision was virtually unchanged since last year! This is more than we could have possibly hoped for. When I told the doctor about the nutritional supplements we give Christiane, she said that she never sees this sort of stabilization in Batten patients and then she asked who our nutritionist was. I could hardly wait to call Richard Abdo, our nutritionist, and tell him the good news. He has done a phenomenal job addressing the effects of Batten Disease through Christiane’s diet and supplementation. Richard has never had another patient with Batten disease, but applies what he does know about nutritional support for her brain based on other neurodegenerative conditions he has treated. Just by knowing what is necessary and doing what is possible, he is making an indelible impact on Christiane’s life by improving and extending her quality of life.
In addition to the support Christiane is getting nutritionally, she is surrounded by an incredible Special Education team, family friends, tutors and teachers of all sorts who encourage her learning and create new opportunities for her to thrive, by simply doing what they know to be possible. They are fluid and flexible and willing to explore the impossible with every challenge Christiane faces.
As Christiane began losing her vision, my dear friend Cherie sent her a Nook, which is an audio device that reads books aloud. The intent was for her to learn through reading without having to struggle to see through one spot in her left eye and be challenged phonetically by every word. As her vision declined, we removed the academic goal through Special Education for her to read in a conventional way and became solely focused on her ability to learn. Two mothers and a team of teachers responded by simply knowing what was necessary and then doing what was possible. Once we allowed all of her reading to be accessed audibly, her learning skyrocketed. At the beginning of this year, Christiane was assessed on a 4th grade level for vocabulary and reading comprehension. Just last week she was reassessed and has now elevated to an 8th grade level even though she is only in 6th grade! What started as a response to do what is necessary has become a beautiful picture of what is possible, and now the child we thought would never learn to read has accomplished what we once thought to be impossible.
I always thought that playing the piano would be a great tool and a natural place for Christiane to explore through touch and sound and have the opportunity to express herself through music. We found the perfect teacher, but after many lessons, Christiane began to refuse practicing, digging her heels in and absolutely refuting every attempt I made to try to help her learn her assignments. I don’t quit easily, but I finally surrendered with a phone call to her teacher saying that I thought it was time to give up on piano as all of my efforts to encourage her to play seemed to be in vain.
To my surprise, her teacher, Mrs. McHorse, so sweetly but firmly said, “Well, we just need to try something else………but she can’t quit”. Those words, “she can’t quit,” echoed like music to my ears and I thought, “I love this woman; she’s got gumption, and a whole repertoire of possible”. For the next couple of weeks, Mrs. McHorse came to our house to add an extra lesson. Slowly, but surely, Christiane came around and began enjoying playing the piano and now takes pride in performing for her grandparents.
I believe that music is wonderfully enriching for the brain and the combination of all these activities are helping Christiane thrive by staying engaged in a multitude of ways.
I am awed by how a simple collection of people, doing simple every-day tasks, can have a monumental collective effect on my child. I wonder if any of them ever doubt at the end of a hard day, if anything they do matters or counts? I wonder if they ever get lost in the mundane decisions, minutiae and ordinary tasks of a day and ponder whether or not they are significant or relevant. All of these people contribute because they recognize what is necessary for a child who has special needs. Individually, a group of people, who don’t even know each other, simply do what they know to be possible and are unknowingly making an impossible difference in Christiane’s life.
I am inspired by their devotion, and now remind myself that although my ordinary daily routines at times seem fruitless, I must continue to do what is necessary, no matter how small, and do what is possible. There is also a new appreciation that I am only a small part of a much bigger picture, and there is purpose to my seemingly routine activities. After all, the simple act of a friend sending a card has inspired and created a new awareness for me, and perhaps now also for you. And, what’s more, through Christiane’s own belief in what is possible, I find myself taken by her confidence and belief that anything is possible.
Last month, Christiane came home from school and pulled out a yellow sheet of paper from her backpack announcing that she was going to try out for cheerleader. I wasn’t completely sure how that would work out for a kid with very little vision, but she had her sights firmly set on those pom-poms and short skirt and absolutely no interest in conversations about possible disappointment should it not work out. She never wavered in her decision, so despite any reservations that I had, we encouraged her to follow her dreams. For the next two weeks, she spent every day after school practicing her sideline chant and cheer. She told me that the coach told her that she could just clap in parts if she got stuck during try outs and that was going to be her trick to persevere through any difficulty.
The announcement day finally arrived and Christiane had, in fact, made cheerleader. The excitement in her twinkling eyes and her contagious broadening smile as she heard the good news will be treasured among my favorite memories. We were delighted for her of course, but mostly inspired by her own belief in what was possible.
And, after it was all over, I couldn’t help but ask: “Christiane, what would you have done if you hadn’t made cheerleader”? She looked up at me and dryly said “hmm…….probably golf. Have you ever seen me hit a 7 iron?”
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