Sparks
I had the unfortunate experience of losing a child to a pediatric cancer. It was a life-changer, that’s for sure. So now as part of my life’s mission, I want to help others who are going through the same or a similar thing. Through music, through writing, through awareness, however it can happen. One little bit at a time. You can help too. Go this link here and join the community. Give a little something to the foundation. We all have to try.. And if you’d like, you can read the bit below for more of a story.
Sparks (3/30/2014)
A terminal illness diagnosis for a child of any age is a parents’ worst nightmare. The diagnosis leaves you speechless, and then undertaking the fight that accompanies the illness is an experience that will mutilate your existence down to its very core. There’s a problem with the word “experience” however, because it seems to indicate that the span and scope of losing a child is something that you go through, are immersed in, and come out of. An experience has a beginning and an end. An experience is something that happens to you, that you put yourself at the center of, that you look at from your own point of view and judge and annotate and measure. You can look back at experiences with a reflective nature.
But this is so much more than an experience. It takes the amazing act of discovering the deepest roots of human love and bonding and having them torn from you, like losing a limb by brute force. It forces you to re-assess the act of living and the inane purposes into which we put ourselves and our precious time. It re-aligns all your relationships, for better or worse. It puts mortality directly in front of you to see with painful clarity, and because the child is yours and yours alone, the questions you might ask: why, being the central one, are even more unanswerable.
Our second son Teddy was born on March 31st, 2009. He was a beautiful, blond, cheerful baby with a quiet and intelligent disposition. He took after his French mother and was just beginning to look more like her when we lost him three and 1/2 years later on December 13, 2012. He was a victim of a rare pediatric cancer called neuroblastoma, that we had never heard of when he was diagnosed, and afflicts only about five hundred children in the United States each year. It is a very difficult cancer to cure and the longterm survival rate is around 10%. When i sat with an oncologist at Kaiser Hospital in Santa Clara, CA after receiving the diagnosis, she calmly informed me that Teddy probably had something like 2 to 4 years of quality life to live.
This news, about an 18 month old baby who had just begun to walk. His long and painful treatment would happen during his learning to talk, feed himself, and play. His future was not a bright future. It was impossible to believe when we heard this news, and yet it was a cold, unchangeable reality. No amount of positive thinking could deter this cancer’s ultimate goal.
Somehow, in this moment, something hardened inside of me. A primal instinct emerged. The rest of his days were no longer my days. They were his days. The time he had left was for him and him alone to enjoy. Every minute counted – and counted big. I looked at this little child lying in a hospital bed with no clue about his likely future, wanting me to entertain and love him, and in this moment I erased myself. Every concern I had – career, relationships, my own health, my happiness, was instantly gone. I had no desires of any kind to serve except to make every minute of his life the best that it could be. I was utterly destroyed and could only exist within the framework of his perception. He could barely call me “Daddy”, but that was the only person i needed to be.
Earlier I mentioned that this kind of news is every parents’ worst nightmare. I can easily think of worse news. Dropping a 5 year old off at school only to hear 60 minutes later that your child was mercilessly gunned down by another young person in their classroom – that would be worse. Having another human intentionally take the life of your child; kidnap, sexual assault..these things are worse. Knowing that your child felt fear and terror and pain or was alone in their final moments. Worse. Knowing that the death was a result of an inherently violent society which simply refuses to acknowledge its core problems, for such a long list of reasons and with such a wide variety of solvable impasses..this is worse.
Teddy was taken from us by an act of nature, a far more powerful force than any human creation. It was nature that created him through us, and nature that took him back. Had we not discovered something was wrong he would have been gone by the age of just 19 months. He was simply not meant to be. And yet he was – so, although he was not meant to be for very long, he was actually very meant to be. All of us live short lives in nature’s terms. We come and go quicker than the trees, the turtles, the beaches, and the boulders. A little boy like Teddy’s 3 1/2 years is just a micron of a life.
And yet here I am, thinking and writing about it. I’m 42 years old. I live and breathe and operate in my time, among my friends and family, in my society. I can impact it. I can choose not to impact it. I can live quietly, I can live loudly. I can attempt to be remembered through great deeds or works of art, or realize that like most great deeds and works of art except the most very well branded (whether by accident or design) all of us, and all that we do, will be forgotten eventually.
It’s as if our global consciousness is hardwired to decimate the past in an even more powerful way than our countless attempts at immortalizing ourselves. Despite our efforts to catalog and inscribe, etch into stone, build and monument, we simply cannot keep up with the ever-changing nature of civilization, and we cannot beat nature. The Egyptians in the B.C. epoch built the most astonishing structures and literally carved their histories in stone, and for all their work we know very little about them- when, who, why, to what end, whether tombs or observatories, messages or warnings. They were hell bent on being remembered, and the simple fact is that while we can gaze and wonder at what they left behind, all they can really be are people from long ago who kept very, very busy. And they are far from the only ones. After more ice ages and epidemics and another short 10,000 years of evolution, who is to say that the times we live in won’t be every bit as mysterious? Who will be able to go back and read all the information stored on some hard drive packed into a mountain somewhere? And compared to the amazing works left by far older civilizations, who would want to? No, I think our information society and shortening and hacking of all that we do is only serving to make us more forgettable. We serve the computer now, and it serves us. And unlike hieroglyphics, computers degrade quickly and permanently.
I don’t know how to accurately describe this little boy we called Teddy. Many people that met him before he was diagnosed remarked that he had a special vibe about him. An inteliigence. A sweetness. A lovely smile and a soothing, happy personality. He was more than just a cute kid. He was special. I can’t say that common term that he was an “Old Soul”, because I think maybe he was actually a “New Soul”. He had an innocence and charm that, in my experience, is rare among very young children. There was no trace of brattiness, impudence, or meanness in his personality. I know, every parent likes to brag about their children. There are many wonderful children inhabiting our planet. How special was Teddy, beyond to me and my wife and our other son? i can’t say for sure. But I was his father, and i can write about him. And the people that read this can maybe try to understand themselves through him a little. It won’t be because he accomplished something great in his lifetime. It has to be just for being himself and living to be 3 1/2 years old, and for taking every medicine and shot and radiation and chemotherapy we put him through with a smile on his face. For all the dozens of people who met him and were genuinely touched, and even more so when they found out he was battling cancer. If I die and the God-Myths are true, and I find Teddy in “Heaven”, i won’t be the least but surprised if it turns out he was an angel, and he was sent down here as a personal reminder to me not to take my life or anything in it for granted.
Because the greatest change Teddy may have affected, may have been on me personally. As a human being. For because of his beautiful smile and pure-of-heart nature I have learned to cast off so much unnecessary baggage from my life. Baggage you should all get rid of. You are human, naked, spinning in an open meadow, surrounded by wildflowers and skies and trees. You need not ever be trapped in anything that forces you down, or into submission, or into darkness. And if there is truly no choice in the matter because you were dealt a terrible hand, you will be set free, when death comes. I watched this little boy, in front of me, pass from this living world back into the next. The strongest message that came to me while he died was a very simple one: “I will be there soon enough”. I don’t remember if I feared death before I saw his, but I have no fear of it anymore. We all know that before the advent of modern medicine children and people of all ages died far more frequently than they do now. Try to remember this, i admonish you, all the movers and shakers and tech-preneurs and reverse jaded hipsters. You’re living in a lie. Teddy was truth, and truth is two things; life, and death. Both are fixed states of being. The ignorant, twitter-happy middle ground so many of you inhabit is alarming, to those of us who have been to the dark side and back. Our culture is sick with itself in many ways. People like Teddy – like pure radiant light – are the cure.
Teddy and I had some great times together. We laughed and looked at trains and battleships, had funny conversations, swung on swings, played with legos, opened presents, and traveled. He loved trains with a crazed passion, and his excitement every time a train went by, or we saw a train in a toy store, or rode on a train, was the most wonderful, wide-eyed, jubilant excitement i’ve ever witnessed in a person. I make it a daily mission now, to take the things I am passionate about and look at them through Teddy’s eyes, every time I see them. To live with unbridled enthusiasm for the things that I love. To spread that enthusiasm and that love to others. I think of Teddy as a gift now, a gift we received from the thousands of generations and billions of years that preceded us on this planet. Because if we take his gift and we use it, we wield this joy and passion, we smile forward, and we fearlessly take on the challenges in front of us, then we honor his short years– and construct from his memory a powerful tool with which to face life. I’ve realized maybe this is all we’ve ever needed from our many religions, myths, legends, and heroes. People that had the spark in them to give us something we need. Through Teddy, i finally caught some of this spark, and I’d like to build a fire with it.
While we underwent the chemotherapy treatment with Teddy, we kept a journal on a website called Caring Bridge. I’m including in this piece the entry from the day that we lost him.
“As if by some incredible premonition, our friend Hannah organized a candlelight vigil for us last night. A huge amount of people came to our home, and all of my French sisters-in-law, our friend Garth from Yosemite, and my mother in law Renee lit hundreds of candles in rows and stars and hearts and patterns all around our yard. A big bonfire was lit. All these people held candles and sang songs and both Clarence and i were able to visit with nearly every single one. For about 10 minutes, Clarence held Teddy in her arms in our bedroom window and let him look upon and hear this beautiful scene. It was truly a gift to Teddy that I know gave him feelings of love and comfort. He only experienced love and generosity and joy in this life.
Around 2:00 today the sun was blazing down from the sky, headed for the Bay Area sunset we know so well. Teddy was in clear discomfort all throughout the day, and both Clarence & I felt his time was nearing. Our hospice nurse said he could be a state of near death agitation for hours, or days, but i think we knew it would not be very long.
When the sun sets, from our window, on sunny days, we get the full brunt of our powerful star. It is beautiful and blinding. As the sun came into its latitude to be shining directly on us, Teddy was clearly nearing the end. Many people have expressed their faiths to us throughout this process, and many people have let us know that it may be God’s will this, or God’s will that. And it may well be. But I know one thing, we are born of this organic, living universe. Star matter is within us. And never have i ever felt more like I was in the presence of the supernatural than having this mighty being shining on us, and I could almost see Teddy’s last breaths, and the stardust that makes up his soul, being pulled back towards that Sun. it was as if the Sun had decided to choose the moment, and envelop Teddy in its light, and take him back, back to the stars. In a way, it was beautiful. He gave Clarence a little smile in his last moment as she held him in his arms.
Out there in the world people are suffering. Suffering is all around us. I know we can’t all live our lives helping someone every day, or devoting hours of time to others. We all have to take care of ourselves first, and I say enjoy this world if you are lucky enough to have the ability to do it. I wouldn’t be writing this however, if I didn’t encounter people daily who seem sorely lacking in self-awareness. People who don’t take in the news, the bumper stickers, the overheard conversations with a sense of empathy and true interest. I have a terrible fear that something has gone so far wrong with our priorities in the western world, that we have begun to lose touch with our humanity in a way that will doom us to a spiritual limbo. There is a movement of hyper-educated atheistic culture capitalism going around that is so clinical and relentless and is nothing more than a product of people who have suffered so little they fool themselves into believing they can beat every system. So to those people, I ask you: what can you learn from a 3 1/2 year old boy who faced cancer with a smile?
He never drank coffee or had a bank account or read a fashion magazine or watched an awards show. He was dealt the worst hand of all by some points of view. But from another perspective, he was lucky. His was a life of love showered on him and he gave it back to anyone who needed it, with absolutely no reservation. Life, the sun, love, and Teddy and those who feel it at their core..this is what is worth remembering, and what we should etch in stone.
Never had so stark a choice been presented to me when he was diagnosed. It was either handle it, or fall apart. And now on the eve of what would have been his fifth birthday, i find myself still facing that choice as we grieve for him and re-assemble our lives. Either let the fire go out, and sit in the cold, or take the sparks he gave us and keep ourselves warm.