Tag Archives: Charlotte Benson

Necessary –> Possible –> Impossible

iGnite - Doing the ImpossiblePoint to Ponder:

What’s your impossible?

by Neissa Brown Springmann

by Neissa Brown Springmann

Has there ever been a time in your life when completing a project, accomplishing a goal or getting through a particularly difficult situation seemed just plain impossible?  Did you maybe procrastinate starting because you knew the journey would be long, uncertain and maybe even agonizing? I’d like to be able to say that I’m happy to jump on any project, goal or problem, but too often I instead get stuck over-thinking the “how” as well as the magnitude of the desired result.  All this does is overwhelm me, delay the start and discourage me from even getting started.

Recently I received the Beyond Batten Disease Foundation‘s newsletter and in it read the brilliant article Possible by Charlotte Benson.  In it, Charlotte, the mother of Christiane Benson who has Batten’s Disease (a neurodegenerative condition that causes seizures, blindness, cognitive and physical decline and is terminal by the late teens or early 20’s) shares incredibly exciting and encouraging news regarding Christiane’s eyesight and middle school successes. Here’s a little teaser:

“A couple of weeks ago, we had Christiane’s annual visit with her opthamologist 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.” 

One of the many things I love, love, love so much about Charlotte’s article is its relevance. We would be hard pressed to find a person on the planet who doesn’t sometimes get bogged down by the magnitude of life and occassionally wonder “how in the world am I going to get through this? And where do I even begin?!” Instead of focusing on what’s necessary or possible, too often the tendency is to look at the big and overwhelming im-possible, first.  However, when we flip it and instead start with what’s necessary, then accomplish what’s possible, it changes everything. Before long, what once felt impossible becomes possible!

If you’re like me, you are likely tired of hearing about my upcoming move to San Diego, however I am declaring that Necessary –> Possible –> Impossible is my new mantra for expanding iGnite into San Diego (and really life in general).  When I look at the big picture and how it’s all going to occur, it’s too overwhelming and makes my brain hurt.  But, when I break it down into first doing what’s necessary (sell our house, find a good neighborhood and home to live in, get moved and settled, find a church, figure out my remote role for iGnite Austin, etc.); then do what’s possible (have fun and explore with the children, get familiar with the area, make friends, find a babysitter,  find a preschool, have iGnite Escapes to San Diego, etc.); before long and in some capacity iGnite San Diego will be up and running and the impossible will become an inspired community of women sharing life through health and fitness, and new friends for us all!

So…what’s your impossible? 

Action Item:

If you have a daunting “impossible” dangling in your life, I highly recommend you first do what’s necessary, which is gain strength, encouragement and inspiration by reading Charlotte’s article, Possible. Your impossible is awaiting possible status!

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A Night to Remember

Point to Ponder:
Do you have a difficult time accepting the unknowns of your life?
by Neissa Brown Springmann

by Neissa Brown Springmann

While I am certainly not trying to compare my dancing abilities to Betty Cunningham (our iGnite dance leader extraordinaire), I love a dance party!…especially with girlfriends, which is exactly what took place this weekend during Run to the Sun – the overnight relay race from Enchanted Rock to Camp Mabry benefiting Beyond Batten Disease FoundationExhilarating, very hard, hysterical, boundless joy, exhaustingand absolute fun are some of the words that describe Team iGnite’s experience.  It’s actually very difficult to articulate the unforgettable event so I’m not sure I’ll do it much justice in writing. Maybe saying that staying awake for twenty-nine hours, still having a smile on my face and in my heart, and wishing I could do it again next weekend says enough?

In addition to witnessing the awe-inspiring power of community as well as countless displays of extraordinary courage and strength, there were two specific moments that made a sizeable impact and still have me thinking.

The first was during my relay leg, around 1:30 a.m on Hamilton Pool Road.  It was of course dark so I wore reflective gear, blinky lights and a head light.  Even though I knew my run was difficult and hilly,  my head light only allowed me to see about fifteen steps in front and therefore I couldn’t anticipate what was coming up until it was upon me. Also, because I desperately wanted to mentally prepare for what lie ahead and feel like I had some control, I often times tried manipulating my head light to see if I could get greater range, but it was always a waste of effort. Therefore, I had to alter my mindset, accept the unknown while not giving up, and accept taking it one step at a time.  It was blind faith until every 1.5 miles when I heard the sounds of Team iGnite–sirens, cheering and the non-stop dance party.  Hearing and seeing my friends was not only comforting and energizing, but their support enabled me to keep going and feel confident that I could do this!

In hindsight, this was analogous to life.  There are so many times during our life journey when we are not exactly sure what lie on the road ahead, and it’s during these times that we don’t need to focus on the end or even know the exact route.  Rather, the opportunity is to accept and trust our challenge or unsure path, don’t worry about crossing a bridge until we need to and take it one step at a time – one minute, one day and one week at time – knowing that when we don’t have the answers, strength or confidence to take that next step, the answers will come and our community of friends and family will lift us up and pull us through. It’s pretty awesome!

The next significant impact came after we finished the relay at Camp Mabry.  BBDF held a kids 2K around the beautiful and new track.  Durant, my four-year-old son, wanted to run and despite being physically juiced, I could not turn down my little’s guy’s desire.  He was the youngest and we were at the back of the pack of kids and having fun running when I looked to my left and saw Christiane Benson running WAY ahead of us.   (Christiane is the precious 12 year old who was diagnosed with Batten Disease when she was five years old and is the inspiration of the Beyond Batten Disease Foundation.)  What you may or may not know is that Christiane is blind.  She can see blurry objects and will one day be completely blind.  You would think this would slow her down, but not even close.  Christiane wasn’t just running- she was sprinting!  Had I not known who she was, I would have NEVER thought she was blind or had a terminal illness.  She did have a friend nearby, but this full of life and fearless child was beyond inspirational and once again proved to me that not only is anything possible, but also no disability or illness can define or determine our limits.  In fact, there are no limits to what each of us are capable of doing. Not just physically, but in life in general.  Nothing can or should get in our way of living a full and fearless life!  If Christiane Benson can do it, so can we!

Finally, below are beautiful quotes and personal testimonials from Team iGnite and our Run to the Sun experience. We cannot thank you enough for your donations, support, thoughts and prayers.  Our team goal was to raise $6,500 and so far we’ve raised $7,335 and hope to continue to raise more throughout the remainder of the week.  This is incredible!  We felt lifted up by your support and prayers, and for those we are so grateful!

Team iGnite/Run to the Sun Testimonials

Babe Keahey: I loved the encouragement and joy everyone had when cheering on the runners throughout the night!  Whenever it started getting difficult- there was always a light at the end knowing that your teammates were welcoming you to finish.

Catherine SandersonWhat struck me most was the impact that having a team of friends wholeheartedly supporting me and reminding me they believed in me and that I could do it in moments where I was struggling to believe I could go on had on my ability to push through a hard run.  Such a perfect illustration of being able to go further and be stronger when we allow others to fully support and sometimes carry us through hard times.  A close second favorite memory is our glow stick rave dance parties in the middle of country roads in the pitch black! 🙂

Courtney Seal: Run to the Sun was an incredible challenge and event where each leg of the race was full of both unforeseen challenges and rewards both physically and emotionally. Amazing experience and amazing to share it together.

Jenni Thurow: The Run to the Sun made me realize that the words and support of others are SO powerful. The words of others can help us accomplish things either we never would try or we never thought would be possible.  Every time I wanted to give up I would see the iGnite team in a distance and I would be fully recharged.  Anytime I was ready to give up or got scared being by myself in the middle of the night I would see the blinking lights of the Tahoe in the distance and know I was not alone.  What an amazing run!

Jessie D’Andrea: Run to the Sun was an amazing experience that I will never forget.  From running in the darkness of the night, but knowing I wasn’t alone, to lifting these children who are battling Batten Disease up in support and prayer, I treasure the memories.  Also, the kind of team support Team iGnite showed not only to our own team but to the other teams’ runners will forever be in my heart.  

Kathleen ParkerA truly unforgettable experience.  Words can’t describe the outpouring of love and support I felt.  Truly life changing for all of us.

Laura Gentner: The spirit and friendship of the group was uplifting and genuine.  It was amazing how committed this team was to rallying around each woman during the race – cheering and pumping them up the entire time.  I’m so glad for the experience and to know the iGnite women even better.

Maggie McCauley: Unbelievably rewarding. The love, encouragement, spirit, and fun shared by our team and beyond taught me so much in so little time.  I now truly understand what teamwork and camaraderie mean.  Knowing that you are going to see someone who cares and believes in you throughout a tough run makes the difference.  Run to the Sun has inspired me to accept every challenge knowing that I have a team who will always support me.

Molly DanielsI loved every minute of the experience because it was non-stop support — yelling, cheering, dancing, laughing, singing — for every person running, whether or not they were on Team iGnite.  What an inspiring event that I will always remember!

Paige Clark: I loved the magic of running through the peaceful dark stillness of the Texas Hill Country at night, which was made even more special by the constant enthusiasm, joy and loving support of Team iGnite. What FUN we had!!

Action Item:

Whenever in doubt of your capabilities, grab a friend and let them lift you up!

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Closed Doors & Open Doors

iGnite - Open/Closed DoorsPoint to Ponder:
Do you worry and pray?

by Neissa Brown Springmann

by Neissa Brown Springmann

As I mentioned two weeks ago in the journal Keep It Simple, my husband is a basketball coach. For seventeen years he was employed by the University of Texas as an assistant men’s basketball coach. Last Sunday UT made the decision to end the Rick Barnes era and begin a new one, so currently Russell is unemployed, as the firing of the head coach affects the entire staff. The coaching profession is unstable, and we recognize how blessed we’ve been for Russell to retain his position for seventeen years. In addition, the majority of our family is near by, we have an extremely supportive and loving community, and we both have worked our dream jobs while living in Austin, TX — not to mention that my alma mater is the University of Texas! Are you kidding me!?!? This was perfect, and after seventeen years our roots and comfort are as deep as a five-hundred year-old oak tree.

In the twelve years that Russell and I have been together, with ten of those being married, this time of year is always stressful! It’s the time when he’s been offered other assistant and head coaching jobs, but he has always turned them down because of our happy life. Rick Barnes always advised Russell to “not mess with happy” and because college coaching is very hard, intense, extremely competitive and finicky, Coach Barnes’ other advice was to “not take a job unless it was a job we’d be satisfied with forever, as well as in a location we’d be content in living forever, because in college coaching, it could be your only and last job.” Extremely happy is how I’d describe our life in Austin, which is why we chose to turn down good opportunities, even knowing that this day was more than likely inevitable.

The week before the official “end of the era” occurred, we knew uncertain times lie ahead. My wise and faithful sister Shonna let me know that she and her husband were praying that whatever doors God didn’t want us to walk through would be slammed shut, and the doors He does want us to walk through be busted wide open. We have adopted this prayer for ourselves and it has helped us release some of the “what if’s” and questions, which are the mental and emotional killers. I’d like to say it has taken all fear away, but it still lingers, and for me, it shows up every time Russell speaks of a potential job that is not in Austin. This is what happened early Thursday morning before he left for the Final Four, in Indianapolis.

He let me know about a job that of course is not in Austin, which caused a real physical rush of fear throughout every square inch of my body. In support of Russell, I didn’t say a word. He needs my support more than anything and not my fearful rants. I’m learning the significant differences between a man and woman’s heart, and his deepest desire is to provide for our family while his greatest fear is to not provide. While I completely honor and respect this, my deepest desire for our family is to remain where we are: surrounded and supported by our family, community and living in an amazing city. So, as I gave him a hug goodbye, I was flooded with fear and my mind wandered in a million different directions. I was consumed and debilitated with worry and I knew I couldn’t continue down this path so I instantly prayed for God to fill me with His Peace and help me trust in His plan for our life. In the midst of my prayer it hit me. If I trust, then I trust, so stop not trusting! And I do trust, so I needed to stop second guessing God.

At the same time, I remembered an interview with Oprah and the rapper 50 Cent (strange, I know!). Oprah asked about his faith and he boiled it down to this: “You can pray or worry, but you can’t do both. I choose to pray.” He is so right, and at that moment in my prayer, I felt total peace, which I continued to feel. In fact, our closed door/open door prayer has been super cool witness because God is answering questions without us having to wonder. Several doors have slammed shut which is an absolute answer that God does not want us there. Without believing in this prayer, Russell would have felt defeated, rejected and thinking that he was not good enough. Instead, we know it is not where God wants us. In addition, a few doors are currently cracked open, but no doors have been busted wide open. This tells us that currently we are exactly where God needs and wants us. It has also led to Russell leaning on a variety of wise male friends and mentors, and with the exception of him being gone a few days to Indianapolis, we are reaping the benefits of time. If he did have a job he’d be out of town recruiting and we wouldn’t have this sweet time together. We are grateful!

Finally, on Thursday morning, the same morning when I was so overcome with fear and then peace, Durant (my four year old son) woke up yelling, “Mommy, Daddy, Mommy, Daddy!” I walked into his room, held him and said, “Durant, I am here. You don’t need to be scared.” As I lay there holding him, it hit me like a bolt of lightening, that is exactly what God is telling us.

Truly, we have no idea what our next steps are, much less what our next chapter looks like, but what we do know is that the antidote to worry is gratitude (Charlotte Benson) and that God will continue to close the doors that He doesn’t want us walking through, while only opening the doors that He wants us walking through. We are only one week into this interesting journey, and we are blown away with what we are learning and discovering — we’re also being reminded of how absolutely blessed we are with amazing friends and family members (I’ll eventually share more). What we do know is that we’ll be fine, our life will begin to settle sooner than later, and most importantly there will be a day when someone else is walking down the fearful job loss or career uncertainty path and we will be able to hold their hands and with confidence assure them that God is with them and they don’t need to be scared.

Happy Easter and Passover!

Action Item:

Trust God through the hard times knowing He has a plan for you and be willing to offer first-hand comfort and support to someone experiencing difficult and uncertain times.

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Real Women, Real Stories | Charlotte Benson: Finding Hope After My Daughter’s Devastating Diagnosis

iGnite Real Women, Real Stories logo

Charlotte Benson

Photo by Catherine Sanderson | http://www.catherinesanderson.com

Roots:  I grew up in Baton Rouge, Louisiana, and became an interior designer.  When I was 31, I moved to Paris to export antiques back to the U.S. and while living there I met and married my husband Craig who is from Little Rock, Arkansas. He said that I was the only one who could understand his French! We moved to Austin in 2002.

Family Life: We have two children, Christiane, age 12 and Garland, age 10. My entire family (3 siblings along with their children and my parents) have all moved to Austin.  We are a family of 21!

Favorite Quote: “Just when the caterpillar thought the world was over, it became a butterfly.” (Anonymous)

I’m Most Inspired By… Craig, Christiane and Garland inspire me everyday. They teach me about life and challenge me everyday in ways that inspire me to be a better person.

The Best Advice I’ve Ever Been Given:  The best advice I was ever given was not advice at all. My grandmother made an indelible impression on me without ever having offered a single opinion. I learned that the ability to make a meaningful impact on others is more about the life you live than the advice you give.

Something Most People Don’t Know About Me… This past summer, I went on a week-long overnight campout in the Teton Wilderness without ever taking a shower or washing my hair!  And I can still ride a tricycle!

My Story

Bensons Fall 2013

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.

To read Charlotte’s stories, please visit http://beyondbatten.org/category/news/a-mothers-story/

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iGnite’s Real Women, Real Stories is a series highlighting the inspiring lives and experiences of women in our community. We hope their stories motivate and inspire you to live your life to the fullest.

Know someone who would be a great candidate for a Real Women, Real Stories feature? Email nominations to hello@igniteyourlifenow.com

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