Friday, September 11, 2015

The First Day of School

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.

with gratitude

Jo Ann

Saturday, July 4, 2015

The Light That Never Goes Out

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.