Read the full transcript of author Raymond Rodriguez-Torres’ talk titled “Tragedy to Triumph- Live Like Bella” at TEDxColumbusHS 2024 conference.
Listen to the audio version here:
TRANSCRIPT:
The Inevitability of Tragedy
RAYMOND RODRIGUEZ-TORRES: Facing tragedy is inevitable. It’s part of the human experience. I don’t believe that there’s anyone alive that would debate the fact that tragedy to some degree will face us all at some point in our lives. We don’t all face the same level of tribulation, and we don’t all respond the same way to tragedy. For example, someone might consider that driving on I-95 is a tragedy, or perhaps learning that your mother-in-law has been unexpectedly invited over for dinner this evening could be a sudden tragedy, or tragedy could mean something more in the true definition of the word, something serious, something like an accident, a natural disaster, an illness, or perhaps worse.
And while we cannot control the tragedies that come to us, we can control how we respond to those tragedies. And oftentimes we can agree that they will shape in many ways our future. And so, if we’re able to do that, then we can oftentimes look at tragedy and decide to choose triumph over that tragedy.
Life’s Unexpected Turns
I’m the baby of my family, and as such I’ve planned my life many years in advance. I knew for certain the year that I would get married, and I did. I knew for certain the year that I would have children, and I did. And I knew without equivocation that the woman that I would fall in love with and marry would be Cuban, Catholic, submissive, and a great cook. And that’s the first time I learned that God has a sense of humor. Because the woman that I fell in love with, and I’m still very much in love with, was an American Jewish woman who is tough as nails, cannot speak Spanish, and cannot make a bowl of cereal without instruction. And yet my wife Shauna has been an enormous blessing in my life and in the life of many.
The Arrival of Bella
In 2002, precisely when I thought I had planned it, we were excited as would be any couple to be welcoming our first child into the world, and we named our little girl Bella. Unfortunately, Bella’s delivery was very complicated. My wife was in labor for more than thirteen hours, and subsequently she suffered low oxygen to her brain at birth, which led to a series of developmental delays that would reveal themselves later.
Her early childhood was challenging. Bella suffered with the inability to be able to comprehend and communicate like other children. And so it was a cruel time for her and for us because we knew what it was like to go to birthday parties and be made fun of. We knew what it was like to be marginalized. We knew what it was like to be ignored and not be invited to certain play dates with other families. We would go out to dinner and sometimes we’d have strangers because Bella would moan and not be able to articulate properly, and have strangers come up to us and say, “Your daughter is disturbing our meal. You need to learn how to be better parents.”
And sometimes it’s those that love you the most that can hurt you the most. But despite this challenge, we felt well equipped. Who better than us? My wife Shauna is a special education teacher, I had excellent health insurance as a professional in the pharmaceutical industry, and my father, my best friend, is a pediatric cardiologist. So who better than us to tackle these developmental delays, and help our little girl close her developmental delays? We so badly wanted a normal, typical child.
A Devastating Turn of Events
Well, in 2007, I was traveling as I did extensively during this period of time in my career, and I called home as I typically did first thing in the morning to see how the evening had gone. But this time was different. As my wife Shauna answered the phone, I heard a terror and a tremble in her voice unlike at any other time in our lives. And she told me that throughout the evening, Bella was in discomfort and got up from the bed and kept walking to this little Cinderella princess table that we had in the kitchen. And as she would get up throughout the night, she was falling to the floor. And by morning, she was completely paralyzed from the waist down.
And so I’ve always been a very optimistic person. I told my wife, “Shauna, Honey, perhaps this is nothing serious. Perhaps it’s some sort of viral infection that’s temporarily entered her spinal fluid.” And of course, the next question was, “Have you called my dad?” Which she had, and they were getting ready to go to the hospital.
I immediately sprung into action. I wasn’t too far away from home that day, I was in Orlando, but I got to the airport immediately and pleaded with the very kind people behind the desk to get me on the next standby flight. And as I sat in a chair, the wait was agonizing. As I sat there, and multitudes of children arrived at this airport primarily going to Walt Disney World, walking by me, asking their parents, “Mommy, what’s wrong with that poor man? Why is he crying?”
I was able to get on the next flight, but I was still in disbelief. I said, when I get to Miami, I’m going to resolve this. You see, that’s what dads are supposed to do. Provide, protect, and resolve. When daddy will get there daddy will fix this.
The Harsh Reality
When I arrived at the hospital, I indeed found that my little Bella was paralyzed. And when the nurses weren’t looking I’d take her toes and I’d squeeze them as hard as I could move and they wouldn’t.
Guillain-Barré Syndrome. And it’s an illness where the immune system attacks the neurological system and paralysis begins from the lower extremities and moves upward to the lungs. And the challenge with these patients is that it freezes their respiratory tract and they either have to be intubated or they will die because they cannot breathe.
Thankfully, Bella began the five-day treatment but the first two doses had the potential for such side effects that they have to be given in the pediatric intensive care unit. I pray that none of you ever have to spend any time in a pediatric intensive care unit with your child. And my first night with Bella there, I saw two children die right before my very eyes. And as I beheld my surroundings and my situation with my daughter paralyzed, it’s the first time that I looked up and I said, “God, why me? What have I done to deserve this?” And of course that question came without answer in that moment.
Bella continued her treatment well, and in my optimism I told my wife Shauna, “Honey on day five this treatment’s going to work, those legs are going to start moving, and we’re going to walk out of this hospital.” But on day four, we realized that Bella’s paralysis wasn’t improving. And so her neurologist suggested that we take her down to the physical therapy gym because eventually she would have to learn to walk again, and it would be wise for her to become accustomed with the environment she would be working in.
And up until now, Bella had been in an electric hospital chair, hospital bed, and so we presumed that the paralysis was only from her waist down. But the very moment that we put her down on those very thick mats in the physical therapy gym, everyone realized she had no abdominal muscles whatsoever. The paralysis had come significantly higher than we imagined. She would fall flat on her face and she would pull herself with her little arms all the while looking at me, “Daddy help, daddy help,” and daddy could do nothing.
And so upon observing this, two things happened. One, I had to temper my optimism. We were going to be going home on day five, but we were going to be going home in a wheelchair, and life was going to be exceptionally different. And secondly, they ordered one more MRI of her spine before we departed the hospital the following day to make sure that nothing had been missed.
A Father’s Worst Nightmare
And that night, I slept at home with our younger daughter, Reina, and my wife, Shauna, slept in the hospital with Bella. When I arrived the following morning, I sat down in those bright colorful chairs in the waiting room of the hospital next to my father and my wife. And I was paged suddenly over the loudspeaker to go sign some waivers in radiology. And when I got up and started walking, I noticed that my father got up and started walking with me. And when we turned the corner that we were out of my wife Shauna’s line of sight behind a wall, my father grabbed me by the shoulders and he was crying. And I had never seen my father cry before.
And he said, “I have something to tell you, but I don’t know how to tell you this. She does not have Guillain-Barré Syndrome as we thought. She has cancer. She has an enormous tumor around her spine and that’s the reason why she’s paralyzed.” And of course, the next question is, how do we tell Shauna? And in that moment of chaos you find strength you didn’t know you had and we immediately told her and we’re rushed to go see a neurosurgeon that was waiting to operate on Bella immediately.
He showed us the scan. He showed us how the tumor had encompassed her spine completely and how it had infiltrated the discs. And he told us he would be going in through her back to be able to get a piece of this tumor, but he would be unable to remove it. And I asked him, “Doctor will she ever walk again?” And he said, “Raymond, I’m sorry, but as careful as I’m going to be, I’m going to nick that spinal cord even more. I’m sorry, but she will never walk again.” And off to surgery he went.
Later, Bella had something called a PET scan, which is the test to see if the cancer had spread anywhere else in her body, and in addition to her spine, Bella was found to have cancer in her jaw, her shoulder, her rib, her hip, her knee, her foot, her left hand, and her brain. And that evening, I sat with an oncologist who, as lovingly as he could, told me, “Your daughter is being diagnosed with stage four alveolar rhabdomyosarcoma. She is paralyzed and she will never walk again. Her life expectancy is a matter of weeks to months.”
Now ladies and gentlemen, I can assure you that there is nothing that can prepare you for words such as those. And it’s in that moment that you begin to fear anger and confusion and every emotion in between when you say, how can this be fair? How in the universe can there be any justice here? If there is a God, how is it fair for a little girl who has not had the opportunity to pollute her body to have a stage four incurable cancer?
A Divine Orchestration
And yet, what was about to unfold divinely orchestrated would turn into a story of triumph and inspiration that we would have never been able to conceive. That afternoon my little girl began chemotherapy for the first time now in the cancer center. And right before my eyes as the poison coursed through her veins she began to tremble and shake and sweat profusely all the while looking at me saying “Daddy help, Daddy help.” And once again, Daddy was impotent to do anything. And I stepped out into the hallway to cry because I did all that I could to not cry in front of Bella, Reina, and Shauna.
And I received a call from a friend of mine that went to graduate school with me that changed my life. Inspired from above, he spoke words to me that inspired me, that immediately changed the way that I was thinking, immediately changed the way that I was feeling, and instantaneously changed the way that we were going to act. And my wife and I were immediately put to the test, and we started reaching out to our friends, to our community, and to every possible walk of life for support. You see, because we didn’t need any more Cinderella coloring books, we didn’t need any more Play-Doh, we didn’t need food, we didn’t need money, we needed something more. And amazingly, from every walk of life and virtually every corner of the earth, people stood in agreement with us.
And by miracle, months later, Bella regained the ability to walk, run, and jump. She didn’t live a few weeks or a few months. Bella battled valiantly for six years and in the process inspired a movement to live like Bella, which for Bella meant to serve others. I realized that her developmental delays, which at first were such an enormous problem, later became a hidden blessing beyond we could ever imagine. But because of her innocence and developmental delays, Bella could never fully comprehend the nature of her illness. And so she was innocent. She was fearless and she was joyful. And she taught me that even in the moments of the most difficult darkest grief, if I focused on serving and helping others more, that brought strength, that brought peace, and that brought purpose.
After six years, on May 28th of 2013, Bella took her last breath in my and Shauna’s arms in our home. I am a member of a club that I would never want anyone to be a part of. I held my little girl on her first breath on this earth and in her very last. And as difficult as that sounds, and it is, I choose to look at her life as a gift. I realized that Bella didn’t belong to me. She came from heaven and returned to where she came from. My job as her daddy was to care for her to the best of my abilities for the time that she was here. And while I wish it would have been to 85 years of age and certainly after me, her appointed time on earth was to the age of ten.
Bella’s Legacy
I had the privilege of giving the eulogy at my own daughter’s funeral, and I said something then that was as true in that moment as it is right now, and that is that when you read in the obituary that Bella Rodriguez Torres died, don’t believe it, for she’s more alive than she’s been in her entire existence. And the proof of that has been in what’s happened since.
The week after Bella went to heaven, my wife Shauna, Reina and I charged with Bella’s example, decided to do what Bella would have wanted us to, to go out and serve others and to tackle the number one disease killer of children, childhood cancer. And so from the garage of our home we started the Live Like Bella Childhood Cancer Foundation. And we decided that we were going to go out and fund pediatric cancer research, we were going to support and aid families that had children undergoing cancer treatment, and should a child die of cancer anywhere in the world, Live Like Bella would pay for the headstone, the burial, and the funerals.
Today, Live Like Bella operates in its fully donated headquarters, managed and operated by a remarkable team of compassionate and dedicated professionals. We have raised over thirty-seven million dollars for pediatric cancer research. And Live Like Bella currently provides assistance to families in thirty-seven countries around the world and across the United States. Indeed, Bella is alive.
Conclusion
And so my friends, in conclusion, tragedies will come to all of us. How we respond to them can define much of our future. If we’re capable of taking stock of the unique skills and talents and blessings that each of us have been given, if we’re capable of taking stock of the people that have been purposely in our lives, then when tragedies come, we can choose triumph, we can choose to rise above, we can choose to believe in something greater than ourselves. We can choose to live like Bella.
