Friday, September 11, 2015
I watched Jo Ann as she struggled with writing her appeal for Childhood Cancer Awareness Month. Turns out, today is the day Jo Ann decided to break through her protective maternal shell to deliver the most raw, personal writing she's ever done—and to talk about her sons in public for the first time. I'm glad she did it. In her words, I can feel her passion for the Pablove cause—and for the kids, parents and communities affected by kids' cancer. She also noted something else powerful: at the seven year mark, The Pablove Foundation is making great progress. I'm proud of her. - Jeff
September is Childhood Cancer Awareness Month. Those four words fly right by the ears and eyes of most people. Why wouldn’t they – unless there’s some personal meaning attached to them? September is also back to school month for many families. When most parents are posting their child’s first day of school photo on their social media feeds, there are those of us that look on, with mixed up emotions. We are reminded of what we are missing this time of year, and will miss every year, for the rest of our lives. Today should be my son Pablo’s first day of 6th Grade. Instead of driving him to school, it’s the day I write a note about awareness and remind all of you that childhood cancers exist – and that thousands of children and their families will be devastated by cancer this year.
I have no choice. Pablo lost his life to cancer in 2009, just six days after his sixth birthday. So I’m in the gang of moms who know the need behind those words “childhood cancer awareness.”
Just because I’m at the center of the pediatric cancer cause, doesn’t mean I like being in this gang. I hate awareness months. All of them. That’s my honest feeling. I hate that I feel this overwhelming sense of responsibility to make others aware of childhood cancers. That I’m in this world, part of this crew. I hate it.
Every day of my life is already hard enough. Living without my son Pablo. He would be 12 years old if he were sitting next to me right now. My older son Grady had just finished his freshman year of high school when his brother died. He lost his little brother, the little boy who followed him around, imitating everything he did. He also lost a key source of his identity: being Pablo’s big brother.
There are way too many of us walking through life with a giant hole in our hearts exposed for all to see. That’s why my husband and I – accidentally – started an organization in Pablo’s name. Some days, I wonder if I’m nuts to run a charity whose focus is the disease that took my child.
I’m too often reminded that I’m not the only parent suffering. I signed a sympathy card on Friday. This is the fourth card I signed this year to a family of one of our Shutterbugs students. Sending a beautiful framed photograph taken by their child – and a card splattered with tears from our Pablove staff – fucking sucks.
And right when all that intensity feels like it might break me, I remember: We can make a difference. We are making a difference. It’s about the long game. We have to play it. We are in it seven years now. And we are growing by leaps.
On the days when it’s all too much I remember that my job is to advocate and support other families that are going through what I went through. Honestly, I have a love/hate relationship with the work that I do. I hate the words ‘childhood’ and ‘cancer’ and all that they bring up inside of me.
But. The kids. The families. Our staff who dedicate their lives to this thing. Every day our Pablove Shutterbugs program lights up my heart. Kids in treatment learning the fundamentals of photography and getting the chance to just be kids. Directly funding childhood cancer research and doing our part to bring constructive joy to kids in treatment are the only ways we will ever see progress.
So when the pink starts coming out in a week or so (way before the month of October), think about all of the progress and incredible advances that have been made in the breast cancer field. Then think about what can happen if that same attention, dedication, devotion, and ubiquity were given to our kids – the ones who all those boobies were made for.
Right now, you can be a part of this change. Help kids help kids by buying a Pablove Shutterbugs print, where 100% of the proceeds directly fund The Pablove Foundation Research Grants program. Or donate here and support our general fund which includes our proven quality of life program, Pablove Shutterbugs. You can even make a difference by forwarding this email to a friend.
Whatever you do today, you have the choice to call out to all of those people who – like me – avoid childhood cancer until it is standing right in front of them. Join me to create a love-filled life today and a cancer-free life tomorrow for kids living with cancer.
To those of you who have supported us from day one, I thank you. To those of you who are new to Pablove, I welcome you. Either way, today is a day when I am asking for your financial and social support for our mission, and together we will fight childhood cancer with love.
at 7:30:00 AM
Saturday, July 4, 2015
For parents who have lost a child, there is a day that always looms. It’s the day when you realize that your child has been gone longer than he was here. Today is that day for Jo Ann and me. Our son Pablo died when he was six years and six days old. Today marks six years and seven days that we have lived without him. It's just another day, in many ways. It's not like Pablo is any more or any less gone today than he has been since June 28, 2009. And it's not as if we needed a reminder to know that today was the day.
We are never not aware. We are never not thinking about Pablo. As we sit across from our son Grady, who is now a 21-year-old man, we feel the empty space that would be, could be, should be his 12-year-old brother sitting next to him. Grady is a big brother who is missing a limb, a foil, a partner in crime. A part of Grady is forever injured, yet another part of him is buoyed along in life, knowing that certain things should not be taken for granted. There is a sweetness about Grady that constantly reminds me of his sub-linguistic understanding of everything.
As Jo Ann and I lay in bed next to each other at night, we are aware of the loss that looms above us, around us, between us. We rarely speak of it. Why would we? Talking about the pain and the emptiness won't bring Pablo back. Even as I hear the sound of Jo Ann crying herself to sleep on many nights, I know that I can’t take away what is sharp, what is stark, what is felled inside her. The fact is, when we talk about Pablo, we share our fun and funny memories of him. We trade stories about his brightness, his essence—the thrust of his life with us, with our family, with our friends. And, of course, his life with his friends—who are now giants, with opinions and hobbies and Instagram feeds.
So even though our family has learned how to surf the waves of sorrow, there is still something else.
And every day, I think about it. It goes something like this: there must be some higher ground, some elevated level of grace and clarity, to come of all of this. Our lives can’t be centered solely on loss. In other words: Pablo's life and suffering and death cannot define us. And his suffering and death certainly can’t define his life story. We must derive some meaning from that experience and forge on, right? In still other words: there must be some continuation of our son’s life, and his profound effect on us, and that continuation must be something real and tangible and productive, right?
And it is. Only because we allowed this strange razor-thin ray of light into our lives seven years ago. In the hands of a growing legion of friends, family, and, for many years now, the general public, this tiny light that has grown and grown and grown. Of course, this light I am talking about is The Pablove Foundation. That is the light that never goes out. That is the place where we aim our sorrows, our confusion, our emptiness—in an effort to upconvert all those bewildering, shattered emotions into something productive, warm and altruistic. Into something that feels, well, like Pablo: fun, bright and off the chains.
That light, as it grows in the absence of Pablo, is, for me, the lasting effect of our son. He was a study in Newtonian physics. Constantly talking and laughing and hurtling his body off of things, screaming 'Geronimo!' as gravity did its thing with him. That was Pablo: always in motion. Always in observation and comment mode. Always the one with the bright eyes and the wry smile.
We hope that The Pablove Foundation and its work in the world conveys Pablo’s brightness, his playfulness, his childishness.
The light that started as the hope and love and support of everyone, everywhere is the one that shines out the windows of The Pablove Foundation offices above Sunset Boulevard.
It's the light that is transmitted through all the well wishes that continue to flood in to this day from people like you. Through all the meals people brought us in the hospital. Through the phone calls people made to help our family in myriad ways. Through the endless stream of stop-what-I'm-doing-and-help-someone-else moments that our friends had. And friends of friends. And people nobody knew. Random acts of kindness. People sitting bolt upright in their daily lives. Folks seeing a Pablog blog post, or a Pablove Foundation tweet, and wondering how they would feel if their son or their daughter was in that hospital bed, connected to that IV line, with that metallic taste in their mouth, with that icy feeling in their brain. Everyone, everywhere turning all those fears and questions and how-can-this-be-happenings into love and help and connection.
Pablo is not the only five-year-old that you have known who was diagnosed with cancer and then died. Perhaps you know of another little girl or little boy who is going through treatment right now. Or maybe you know of three kids in your life who have gone through it and are now back in life, running around the playground, indecipherable as a 'cancer kid.' This disease is so widespread today that maybe all of the above is true for you.
All of that started in 2008 and 2009, when our little boy Pablo was still here on this earth. We did very little to instigate it. We received the intention and energy of our friends, and we did our best to harness it.
Today, when we are feeling the immense foreboding that is known so well to grieving parents, and a question such as ‘Where is our boy?’ forms in our heads, the only answer is: he is alive in the work we do, in service of children who have found themselves in that same proverbial hospital bed. getting chemo. We carry this energy, every day, everywhere. We carry this energy in honor of Pablo, of all kids dealing with cancer, and of the countless hours and days our friends granted us. Hundreds of friends who taught us that lots of people doing small acts adds up, very quickly, to a very bright light. We shine the light of Pablove so that we may bring joy, a sense of community, and dignity to others who find themselves on the lonely and bewildering path of pediatric cancer.
We do what we do because we will never forget the feeling of connection and care that comes from simple acts.
This October, I'll be riding in Pablove Across America for the seventh straight year. If you would like to support me on this journey please click here.
at 5:47:00 PM
Sunday, October 26, 2014
|My Cannondale Synapse on the wall in our New Orleans pad.|
NO RIDING TODAY. My legs ache in a familiar way. This ache means that I have used my legs in the service of others—children who I will never meet, but who I know are suffering. Kids of fellow parents who have protected their sons and daughters from every tangible, conceivable danger in life. Except this invisible invader called cancer. Kind of hard to protect your kid from discordant cellular activity. Our son Pablo was one of the 175,000 children who were diagnosed with cancer in 2008 on Earth. 174,999 + Pablo = 175,000. Every year on this planet, 175,000 children and their parents, siblings, friends, entire social ecosystems, suffer in an actual way.
Of course, all of the suffering we endured on Pablove Across America 2014 is merely a metaphor for the true suffering of others. Nothing more. I made a choice to suffer my way from Austin to New Orleans. And I will continue making this choice until the day I die. But, first, I gotta take a day off to rest.
|Naveen Viswanatha snaps a selfie on the road. That's Bill Begien pointing at the camera.|
And I am working hard at this resting stuff. As I lay on the sofa here in New Orleans this morning, David Bowie's 'Hunky Dory' album is playing on the speakers. There's a cup of coffee in my hand, the front door is open, a light breeze is blowing through the house. The air that has combined to make this breeze must have been somewhere near the equator only a day ago. 20 seconds ago, this air must have been flowing over the mighty Mississippi River a few blocks to the west of our front door. And, soon enough, it will be in Baton Rouge, Oklahoma, St. Louis, Chicago, Milwaukee and on and on....
|The Pablove peloton flies down Highway 90, one the final stretch into New Orleans.|
The riders of PAA rolled through the wide open spaces of east Texas and Southeast Louisiana sheathed in wind. Lots and lots of wind. Gulf wind. Vast columns of air traveling with velocity and purpose. Stuff that used to fill the sails of real life pirates as they aimed their rudders to the lawless docks at Algiers, the riverside New Orleans neighborhood where Jo Ann grew up. After seven days of riding in it, we know at least a little about this stuff: how to survive in it, how to duck our front wheels to the left or to the right or right behind the wheel in front of us to get protection from it, how to thoroughly appreciate the miles that roll by when it's at our backs ramming us down the roads, and how, in the end, we just get through it. Wind is assistance or it's resistance. No matter what, it's temporary stuff. There's nothing permanent about it. It's here, and then it's gone. Just like life.
As Bowie's playful song "Kooks" floats through all that air around me, my memory opens to the countless nights I sung this song to baby Pablo. In the dark, without Mick Ronson's winsome acoustic guitar, devoid of backing vocals, I sang "don't pick fights with the bullies or the cads, because I'm not much cop at punching other people's dads." This song always felt just right to me, even if my singing voice was better suited for being a rock manager than a frontman. The poor kid must have wondered what he'd gotten himself into being born to this Papa. As Pablo got older, he would ask me to play "Life On Mars"—the line "Mickey Mouse has grown up a cow" always revved him up. We figured that Pablo loved "Life On Mars" more than just about any other song he ever heard.
It's so nice to know Jo Ann and I were able to witness our little boy succumb to the thrall of a song. Because like all that Gulf air that just goes and goes and goes through his beloved city of New Orleans, Pablo's life blew by so, so fast. Six years and six days. 2,196 days. You have no idea how little time that is until you are kneeling on grass, talking to your son through a brass tombstone.
|The Mayor of Baton Rouge, Louisiana proclaimed October 23, 2014 PABLOVE DAY.|
I had no idea I had no idea how to be a parent. I just followed Jo Ann—the best Mommy I have ever met. I have no idea how to ride a bike. I just follow the wheels of my friends. They keep me going, they keep me laughing, they keep reminding me that helping others is how I honor the memory of Pablo.
Please help me help kids with cancer by donating to my Pablove Across America fundraising goal.
I think you in advance, and if you've already contributed I THANK YOU for your support.
My best to you and your family today.
at 1:35:00 PM
Thursday, June 21, 2012
Today is Pablo's birthday.
'June twenty-first!' I can hear Pablo proclaiming the date, just like that, in his raspy little boy voice. If he were here to talk to me... Holy smokes! I would smash this laptop and never come back. I'd see colors with brilliant clarity. I'd hear sounds reserved only for the divine. The ever-present tension in my jaw and chest would instantly melt away. Most of all, I'd have someone to protect. Someone to complete me. If Pablo were here, I'd be a parent again.
Nine years ago, with a contracting Jo Ann in the passenger seat, and a young nine-year-old Grady in the back seat, I sped down Silverlake Boulevard, gliding over every bump and knot in the road, making our way to the relatively smooth pavement of Beverly Boulevard and its straight shot to Cedars-Sinai Hospital. A few hours later, a little ball of humanity was born. We named him Pablo. Not only because we had decided on that name, but because it was clear to us that he was just...PABLO! When we met him, it was that simple. Pablo.
The following 2,196 days were the best of my life. Pablo gave me a reason to live, and to be in life. From the moment he was born, Pablo was my best friend. He brought joy into my life... Slowed me down... Taught me to breathe, and focus on what's important... His very presence in a room made me feel complete. One of my favorite things was picking him up at the Walther School, where he would jump into my arms when he saw me, and we would sit on the sofa and read. We had fun, always. We had our own lingo, and we didn't care how goofy we sounded. It was our thing.
The 1100 days since Pablo's death have been filled with many things: indescribable emptiness; feeling around in the dark for signposts; a joyful glow watching the The Pablove Foundation blossom in the world; self worth that seesaws between Mt Rushmore and the gutter; physical fitness and a waistline that seesaws much too much; a nonstop longing to belong. All that, plus a relentless professional life at Dangerbird. A life I have chosen, or has chosen me, that is big and constant and sometimes fun.
My statement about fun isn't an insult to those around me who have fun: unfortunately, when your child dies, all the things clinicians tell bereaved parents they can expect come true: 'empty arms syndrome' (a longing to physically hold your child); a loss of purpose and self worth (after all, parenting is the most important 'profession' life has to offer); intense blankness when others around you experience joy. The list goes on...and grows every day.
Parents know that as we get older, our children quickly become the answer to the Great Why. They become 'the reason' for everything we've built, and the reason for sustaining it all—to provide, protect and remain present for them, so that they may have a better life than we had. Consequently, this mad dash to stay in the rat race is nourishing to the soul. By turns, the loss of a child is utterly disorienting to the rat racer. If you've ever been caught in a snowy white-out (being from Milwaukee, I have), you have only a 5% clue what I'm talking about. Snow whiteness is much easier than soul whiteness. That is all I can tell you. And I hope you never find out what I'm talking about.
Today, six months after my 40th birthday, I sit at a crossroads in my life. I hobble into each day with my fractured heart. I try my best to look, sound, feel normal. Some days are great. Some days are agonizing. Having endured the loss of Pablo in 2009 and my brother Scott in 2004, I am never ready for the instability I face in the music business. For a start, those of us on the front lines of the music biz are living through a trauma at the moment. Its unpredictable nature mirrors exactly the unknowingness I felt as a cancer dad. (Note: I chose the above photo to illustrate this common trauma: Pablo faced one in 2008, I face one today.) Never knowing whether any number or scenario can be trusted is often a rollercoaster I want to jump from. I'd imagine my friends in TV and film feel the same way these days.
Having dedicated my entire adult life to advocating for others in the field of music, I don't know anything else. Besides, I'm decent at what I do after 20-plus years in the field. Where all of this is leading is here: I can feel myself wanting to narrow the scope of what I do, focusing on things that bring joy and satisfaction to me. Not because I am not smart, not cool or careless, but because I'm not sure I can volunteer to suit up for yet another cosmic war. I've fought enough of those in my short 40 years on this earth. When things go well there's no better feeling. Seeing large groups of people mass up around small groups of people who pour their guts onto tape for all the world to hear is life-affirming, sacred stuff.
In a general sense, I know I'm not alone in this. Seems everyone I speak to is somehow examining their professional life these days. The neighborhoods populated by creatives all over the world today are faced with challenges wrought by worldwide economic uncertainty and the ease with which people can consume our output with little or no benefit to the creator or their backers. It's an unfair game, with an invisible opponent, just like cancer.
So, on this day, my deceased son's ninth birthday, in this open letter to the world, I proclaim that I will continue to do my best in life and in business and in the work of The Pablove Foundation.
As I point my heart in the direction of Pablo, and hope for some sort of luck, some sort of a break, for the remainder of my days here on this hot, bizarre planet, I can guarantee only one thing: The best I can do is the best I can do.
My love to you and yours. Hug a kid today. Hug a friend today. Tell someone(s) you love them. Make it real. Now, not later.
Thank you for reading this far.
at 4:08:00 PM
Friday, October 28, 2011
Meet Rena! She was diagnosed with Wilms Tumor stage IV with over 20 lung metastasis in June 2010. Rena and her mom temporarily moved from their family in Florida to Pennsylvania in order to be treated at Children's Hospital of Philadelphia. After chemo, radiation, surgery, and many complications, Rena was declared NED this past February. She has since returned to her home in Tampa, Florida and just celebrated her 5th birthday. Rena is living life, back in pre-school, and can't get enough of being home with her family, especially with her little sister and her friends.
at 2:00:00 PM
Tyler is 6 years old and lives in Mission Viejo, CA. He was diagnosed with ALL Leukemia on July 13, 2010. Being treated at Rady Children's Hospital in San Diego, CA, with approximately 2 years of treatment left to go. He loves Lego's and Hot Wheels, playing outside!!! His parents Steve and Jen say they would not nearly as fortunate without the humbling support from the cycling world. Steve has put together irideforthekids.com as a resource to parents of newly diagnosed children. Marisa was diagnosed with Leukemia (ALL) in September 2006 and completed treatment in December 2008. She was then diagnosed with Rhabdomyosarcoma in November 2010 and is currently in treatment. Marisa is a vibrant 9 year old who has battled cancer for more than half her life. First leukemia and now rhabdomyosarcoma. She doesn't let cancer stop her from being a normal little girl who loves to dance and sing and have fun with her friends. She's going to win this fight and show cancer, again, who's boss!
Thursday, October 27, 2011
Zachary was born on April 3, 2001 and diagnosed with Wilms Tumor on April 12, 2005. On Thanksgiving Day 2005, Zak and his parents had their last conversation. His breathing was labored and he had to go on a ventilator. Before he went under they told him they loved him and that they were proud of him. His condition worsened. Three days later he passed away never regaining consciousness. He was a unique and brilliant child, perfect in every way says his dad Steve. His life revolved around his Mom, Scooby Doo, Hot Wheels, dinosaurs, trucks, trains, mud and beach sand. He is his dad's hero and easily the best person he has ever known. Zak is missed every second that is he gone.
at 9:00:00 PM
Mark is now 22 years old and just had his 4 year anniversary of his diagnosis; he was diagnosed at the age of 18 on October 9, 2007 with stage 3 Hodgkins Lymphoma. He went through 6 months of ABVD Chemo and when chemo was completed, he had 5 weeks of radiation. He is doing absolutely great and is living a very healthy lifestyle. He's a senior at UCSD where he's majoring in Astro Physics and helping to run the Rock Climbing gym on campus. He spends all of his free time climbing with his girlfriend Lauren and on occasion, he'll take his little sister Venessa with him. Venessa is 14 and Mark is her hero; she loves climbing with him. This past summer he climbed the face of Half Dome in Yosemite; he started his climb at dawn and finished it at dusk...that's fast! He is also a surfer and cyclist and just genuinely loves the outdoors. In 2008 the state of WI changed their laws and allowed 16 year olds to donate blood. David signed up immediately. It was from that blood drive that he discovered he had MDS, a rare form of bone marrow cancer and his only treatment option was to have a life threatening bone marrow transplant. Out of 11 million people on the bone marrow registry not a single one was a match. His dad and sister were not matches, and his mom Mary was only a partial match. They decided to use Mary as the donor anyway -- she was his only shot. Her to-do list before the surgeries included her yearly mammogram. It was then she discovered she had breast cancer. Finally in 2009 a donor was found. But David's fight wasn't over. He would relapse multiple times and require many risky additional transplants. Finally, earlier this year his 39th bone marrow biopsy showed No Evidence of Disease. He is now 19, a freshman at Milwaukee School of Engineering. It will be awhile before he is considering in full remission, but he is on that road.
at 3:00:00 PM
Austin was diagnosed with yoke sac mixed malignant germ cell tumor on July 13, 2011. He started with two tumors, now has one. Austin is a Junior at Moorpark High School outside of LA. Mesa Verde Middle School in Moorpark is fundraising for Pablove all month. Shaymus is 10 years old and lives near Racine, WI. He has Ewing's Sarcoma and is being treated at Children's Hospital in Milwaukee, WI. Shaymus loves to draw and read books. He loves trains and he is planning on putting a train tracks throughout his whole house. Shaymus has had paintings and drawings go on sale at a gallery and is a gifted artist.
Wednesday, October 26, 2011
Chris Powers was 14 years old when he lost his battle with leukemia in 1985. He was also cousin and best friend to our rider Neal, who was 12 at the time. He's the reason Neal rides, and tonight we dedicate our resting hours to him.
at 9:12:00 PM