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
Remington was diagnosed with Stage 3 Wilms Tumor in Sept 2010 at 7 months old. He is 1 year old and from West Jordan, Utah. Remington is such a receptive and cheerful little guy. He did a great job of winning over his nurses, oncologist, and other hospital staff with his big blue eyes and beautiful smile. Remy has a strong spirit that definitely played to his advantage during treatment to beat cancer and continues to guide him in his little life. He loves to play ball, dance, swim, swing, laugh with his big sister, go camping, be silly, and hang out with his family...including the dogs! Remington is just an amazing little kid. Maximus was diagnosed with Stage 3 Rhabdomyosarcoma at 4 months old. He is two years old and from Hamilton, Ontario. Maximus is 7 months off treatment and 13 months cancer free! He is growing quickly and learning many new things like any 2 year old should!
at 1:00:00 PM
Bella is in treatment for her third relapse of Stage 4 recurrent Alveolar Rhabdomysarcoma. She is eight years old and from Miami, Florida. Bella loves to swim, sing, play music, build things, fish and boat. She loves Mickey Mouse and Disneyworld and her 6 year old sister Rayna, 4 dogs and two parrots (favorite parrot is Roxy!) Jayel was diagnosed with Stage 4 Wilms Tumor in May. He is two years old from Puyallup, Washington. Jayel will compete treatment at the end of November. He is doing great with minimal side effects and his hair is already growing back! Maggie was diagnosed with Thalamic Juvenile Pilocytic Astrocytoma (brain tumor in center of brain) in January 2010. She is five years old from Jamestown, North Carolina. Maggie had brain surgery to remove tumor in January 2010 and suffered a stroke during surgery. Now she has left-sided weakness and complications as a result of the stroke. A residual tumor was found and chemotherapy started earlier this year to treat it. Maggie just started kindergarten, and it is difficult to juggle school and chemotherapy and try to be a "normal" kid. Her latest scans show the tumor is stable; it actually shrunk a little bit. She still has one year of chemo and her parents have lots of hope the tumor keeps shrinking.