The Boy with the Golden Heart
Juvenile Batten disease is a rare and terminal condition that causes blindness and seizures and is mentally and physically incapacitating with an average life expectancy of late teens or early twenties.
If you never believed in fairy tales, this may change your mind. On June first, my daughter, Christiane, who suffers from Juvenile Batten disease graduated from Austin High School. Against all odds, she walked in her class processional and made her way across the stage to claim her diploma. It was a milestone we could have only dreamed of 13 years ago when we received her diagnosis. We never imagined that the happy day of her high school graduation would come and that our tears would be tears of overwhelming joy and gratitude.
When Christiane came home from school one day before graduation, she announced that she was going to the Senior Prom. She had already imagined her dress and reported that she only needed help narrowing down her choices for an escort. Christiane had always been self-determined and independently-minded, so I flashed back to her sixth-grade year on a similar afternoon when she came home from school and pulled a yellow sheet of paper from her backpack announcing that she would be trying out for cheerleader.
A thousand logistical questions raced through my mind as she confidently reeled off a Rolodex of possible escorts ranging from childhood schoolmates and family friends, to a very complete list of every accomplished and handsome boy on the Austin High football team. After careful deliberation, she landed on Beau Beathard, a handsome two-time Westlake State Champion football player, Eagle Scout, and a schoolmate she’s known since she was a child. “Wow,” I thought giggling to myself in amusement, “I better check it out with his mom.” After all, why shoot for the stars when you can land on the moon!? I decided to float the idea past his mother first, in an effort to avoid overwhelming Beau or putting him on the spot. The next day I received this text that read, “Hi, Mrs. Benson, it’s Beau Beathard. I would be honored to go to prom with Christiane! Just let me know when. So happy to do this and I can’t wait. Thank y’all!”
I will never forget her broad smile and the complete delight that illuminated her face when I told her that Beau would be taking her to the dance. Every morning after that, the first thing she asked when I woke her up, was, “Is today Prom”? Christiane spent the next month imagining the perfect dress and spent countless hours imagining her first date. She very specifically wanted a dress that didn’t touch the ground “so she wouldn’t trip while she was dancing.” Of course, she was imagining that, too!
When the day finally came, Beau came to pick up Christiane and I watched from behind as he guided her to the car. He so intuitively held her flowers so she had a free hand to use her cane, plus he seamlessly offered his arm to guide her as they made slow but eventual progress down the sidewalk to the car. There was absolutely not a single awkward moment or hesitation in initiation or leadership. With unflappable confidence, Beau spent the entire evening patiently and attentively attending to Christiane in every possible way with his fixed attention solely on her happiness. As I was a chaperone at the dance that night, I watched in tearful amazement at the incredible selflessness of The Boy with the Golden Heart. Knowing that Christiane loves to dance and sitting face to face in two chairs, Beau sweetly took Christiane’s hands and with absolutely no regard for how he may appear, he began dancing with her while she sat in her chair. After the first song, Christiane leaned over to me and while handing me her cane, she said “Hold this mom, I’m going to the dance floor!” Determinedly, she inched herself forward to the edge of her seat and while using the table for support, she pulled herself out of her chair with unprecedented enthusiasm. He held her hand over her head and in spite of her vision loss and coordinated efforts, Beau steadied her as she twirled around exactly as she imagined she would.
For the grand finale, Christiane was surprised when Beau escorted her to the stage to receive a crown and title of “Prom Royalty.”
The next day, I sent Beau a text to tell him that the evening had been the highlight of Christiane’s life, what a special person he was and that I believed God had used him in a special way inspiring many by his example. He texted back and said, “I’m just really happy Christiane got to have a fun night. Thank y’all so much for letting me go to prom with her. I’m always around if you ever need anything at all, so please do not hesitate to text me. I would be beyond proud if I inspired one boy to do the right thing!” I am sure he did. I know he inspired me and I am humbled to know an angel among us who could show us all what fairy tales are really made of.
I never saw Christiane’s smile leave her face that evening. Not once. I can confidently say it was the happiest occasion of her life and for an evening, she lived her own “happily ever after” in a beautiful story that only God could write. It was her very own fairytale that will forever be etched in her memory and The Boy with the Golden Heart will forever be etched in mine.
Written by Charlotte Benson, Christiane’s mother.
On Saturday morning, the weather was perfect just long enough for the Bensons to share some beautiful words of gratitude and to plant the “Triangle Oak” in honor of all of you. Thanks to those of you who came out. In case you weren’t able to be with us to include your name on the river rocks that were planted with the tree, we wanted to be sure to share their heartfelt message with you:
“They say the true meaning of life is to plant trees under whose shade you never expect to sit.
And, that’s exactly what you have done for our family! In our darkest hour, YOU planted this tree and placed Christiane beneath the only shade in an otherwise desolate and barren landscape. In a selfless act of compassion and love, you have supported us with an unfailing devotion to our family. And, after 10 years of hard work, and on the cusp of a clinical trial, you should be so proud for having put Batten disease on the map! There are simply no words to express the enormity of our gratitude for everything you have done over these last years.
Robert Schuller once said, “I’d rather attempt to do something great and fail, than attempt to do nothing and succeed.” Life is full of successes and failures and eventually we are all faced with taking risks and venturing into the unknown. We may have to choose what college to attend, be faced with divorce, or we might even be taking our career in a new direction. The unknown can be exciting for all of its possibilities, but can also be a breeding ground for fear. However, sometimes we take risks simply because the desire to succeed trumps the fear of failure.
This was certainly true for Craig and me when we started the foundation. After our daughter, Christiane, was diagnosed with a terminal condition called Batten disease, there was an instinctive impulse to do something positive to try to help her and change the trajectory of this horrible disease. The quick instinct to act can also result in long-term, unanticipated challenges and sometimes we find ourselves in the midst of a situation where there is no immediate victory and whose outcome is unknown.
This summer, I found myself in a similar situation contemplating all of these thoughts. I had received an email about an opportunity to go on a parent-child trip for some extreme hiking and climbing in the Canadian Rockies. I was so taken and enthralled by the excitement of an adventure I could share with my 12-year-old son, Garland, that I instantly knew it was something we just had to do. Without hesitation, I signed up for the trip and we planned to join a group of other travelers whom we had never met.
The group would meet in a remote lodge high in the Purcell Mountains in British Columbia and the trip would include climbing mountains, glaciers and waterfalls. We would cross suspension bridges that spanned deep canyons and walk along narrow cables that bridged gorges raging with the roar of rushing rivers beneath. Although every time I watched the promotional video I got sweaty palms, the thrill of this adventure and doing something I had never done before undeniably trumped any logic that may have applied.
When we arrived at the lodge, we met an amazing group of adventurous preteens and parents who were just as excited and nervous as we were to embark on what surely would be the excursion of a lifetime. We were given an overview of our 3-day itinerary, and the highlight would include a 6-hour hike and climb up Mt. Nimbus culminating at its 9000-foot summit where a free hanging rappel would conclude the outing. The climb was facilitated by a Via Ferrata, which is a system of cables, rungs, and suspension bridges that originated during WWII as a mechanism to move troops through the Italian and Austrian Alps.
We began the trek with a hike that took us to base of the first peak. The terrain was steep and narrow with sweeping views of the snow-topped mountains that surrounded us. There were eight of us in our group strung out along the narrow path with a guide leading in the front and another in the back. The climbs were absolutely vertical and the Via Ferrata allowed us to clip on and off a series of cables that would ensure a “dangle” instead of a “plummet” should we lose our footing. As we climbed, we were often spaced too far apart for conversation, and the altitude made me focus on my breathing, so there was plenty of time for contemplation and to be lost in thought. As I climbed the first peak, I really had no awareness of what was coming next, I just knew I was going to the top. I was mostly enjoying the spectacular views and the vibrant colors of the majestic mountains and was in complete awe of the solitude they embodied.
As we climbed higher, my breathing became rhythmic and I focused solely on the next place my hand was going to grasp or where my foot was going to step. I just kept saying to myself, “You’ve got this, you’re almost there.” Soon, the wall had narrowed to a sharp point, and I lifted my head to realize that I was at the literal top of our first peak. I paused to take in the most incredibly breathtaking and wildly unexpected sight. There, far below my perch, surrounded by endless miles of mountains stretching far into the distance was a suspension bridge connecting the base of the mountainside I had just climbed to the base of Mt. Nimbus, the highest peak. That sight will be forever etched in my mind and I will never forget the incredible exhilaration and satisfaction of having just climbed that mountain sharply contrasted by the overwhelming challenge of what lay ahead and the possibilities beyond.
What a metaphor I thought. Like this journey, when we started the foundation, we were certainly motivated, and knew where we wanted to climb in finding a treatment or a cure, but had no way to anticipate every challenging step and obstacle along the way. And, now after climbing for 9 years, we too have the same glorious and unnerving view of a treatment now in sight and the endless possibilities that lay ahead.
Though we have climbed our first peak towards our goal, we still have to cross our own suspension bridge: funding validation studies, preparing patient registries, and engaging regulatory consultants to shepherd us through to a clinical trial. But by God, that glorious mountain peak is now within our sight!
From my perch on the mountaintop, I watched Garland cross the suspension bridge below. He was but a tiny dot crossing each wooden slat attached to two wavering cables, spaced eighteen inches apart. I wondered what he was thinking and how he was doing. This was not a risk whose outcome you immediately knew if you have succeeded or failed, this was an entire day of climbing and at this point, there was no going back. Isn’t this like so many of the risks we take in life? We get overwhelmed and distraught, and we wonder if we made the right choice because we never imagined that it was going to be this scary or this hard. We never imagined that we would find ourselves squirming to get comfortable in an uncomfortable or perhaps painful place that we actually chose ourselves! How do you manage that? One thing I know for sure is that God does not put us on this earth to manage it alone. He gives us community and family and friends to encourage us along the way. When I think about climbing that mountain, with the support and camaraderie of a team, I remember what it felt like to hear someone call out, “Good job Charlotte” and the courage it gave me to navigate a tricky spot. I know what nine years of climbing the mountain of Batten disease has been like being completely surrounded by an incredible army of support. There is a knowing that God has charged our lives with this task, but there is no possible way we could have come this far alone. What a great reminder to pass along that kind of encouragement to others. Everyone is faced with challenges almost every day. A simple “you’ve got this” to a friend, or hug to your child, or a “way to go, you’re doing a great job” to a stranger may make the difference in the next step they take or might even give them the courage to persevere when they may have wanted to quit.
Once Garland crossed the chasm, I started my climb to the bottom of the first mountain peak to take my turn crossing the suspension bridge. There was only one way to cross it for me: as much as I was enjoying the natural beauty and the scenery, there was an intentional determination to miss altogether the view of the 3000-foot drop beneath. So while steadying myself on the cables, I watched my foot as it reached for each wooden slat while completely blurring out the view below. I crossed the entire bridge without ever seeing the bottom of the chasm. One step at a time. Isn’t that how God wants us to trust Him? We can either focus on being faithful or focus on being fearful, but it is impossible to do both simultaneously. How else will we reach our goals if we become overwhelmed by every fearful step or obstacle and the enormity of our task? Where we focus matters, because fear and doubt will not cultivate perseverance or sustain us, but keeping our eye on the goal and keeping our focus on God will. Believe that you are equipped with exactly what you need, trusting God, and be willing to take a risk. After all, how can He direct your steps if you are not stepping?
When we reached the top of the second peak, we had a glorious 360-degree view of quiet stillness and mountaintops that reached as far as we could see. It was utterly breathtaking and I cannot remember a time when I have ever smiled that much and felt so accomplished. My mind raced back to the waves of panic and sweaty palms I had leading up to the trip. “What if” I had given in to the memory of Garland as a two-year-old clinging to my neck as we climbed a simple flight of stairs? What if I had doubted that my newly operated hips would be able to carry me across? But more importantly, what if we had not taken the trip? What if I had missed one of the most extraordinary experiences of my life and the thrill of that happy memory with Garland? We could “what if” ourselves to death in doubt and insecurity, but rather than paralyzing ourselves in the “what ifs” of today, wouldn’t we rather be able to look back from our rocking chair and recount our life with no regrets? I want to ask instead “what if I hadn’t taken the chance?” Because, in the end, I would rather fail trying to succeed, than live with knowing I never had the courage to try.
Though the rest of the summer was spent reliving the challenges and excitement of our adventure, I was most taken by how during the weeks following our trip, Garland walked a little bit taller, and there was an uptick in his confidence, as he was quicker to take on new challenges back at home. It reminded me of how our faith grows. Just like making it to the first peak gave us the confidence to take on the suspension bridge and Mt. Nimbus, our faith builds in the same way. Once God brings us through one difficult circumstance it gives us confidence in knowing He will do it again.
Romans 5:35 says: And not only this, but we also exalt in our tribulations, knowing that tribulations bring about perseverance; and perseverance, proven character; and proven character hope.
I am reminded of this as we face our journey pursuing a treatment for Batten disease. Craig and I believe that we are part of a bigger picture and that God has given us a task. It has been an extraordinary path of trials, difficulty, joy, pain, purpose and hope. He has blessed us beyond imagination and so lovingly gives us His grace and His strength in the midst of it all. As hard as it may sometimes be to see, we are confident that God brought us to this place and He can bring us out again according to His great purpose and plan…and that gives us hope.
And if hope is not enough, there is always inspiration. Though Christiane, who is blind, was not able to go on our trip, her spunk and spirit were with me in the Canadian Rockies, inspiring me every step of the way. Earlier in the summer, we took a family excursion to go on a zip line tour across Lake Travis so she could experience a taste of what our trip would entail. After careful assessment of two short practice runs, Christiane climbed the platform to take off for a long stretch topping trees and a scenic portion of the lake. About halfway out, she let go of the rope and wildly flung her arms open, and I could only imagine her smile and complete delight with herself as she whizzed across the lake hands-free. Like Christiane, we can all decide to believe beyond our limitations and fears, beyond doubt and insecurity and choose to see possibilities rather than limitations. What if we all whizzed through fearful challenges hands-free? We could be confident in taking risks. We could live by faith, believing that God has a plan and our trials have purpose, and know for certain that real failure would mean not having ever tried all. And, while we are at it, why not smile and enjoy the ride?
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.
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.
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.”
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.
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.
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.