Yesterday marked the second anniversary of Ben’s death. He has been gone for two years. In some ways it seems like yesterday that he was here and in other moments it seems like forever. Surviving the first year felt like an accomplishment of some sort. Perhaps what has been most difficult about the second year of his absence is the recognition that we must live through each and every marker and milestone over and over. We are reminded once again that time doesn’t heal…but time passes.

In the midst of our ongoing sorrow, we look back on 2010 with amazement and gratitude. So much has happened! If you had told us on December 30, 2008 that within two years we would have quit our jobs, launched a foundation and strategically partnered with a new research center for childhood cancer we would have laughed—or cried harder. The journey we have been on is totally bewildering. And yet at the same time it feels right. We know we are in the right place at the right time.

As we close the books on the first calendar year of Ben Towne Pediatric Cancer Research Foundation, we want to say thank you. Following the launch event in September, your enthusiasm and generosity has been astounding. It may be unusual for a start up organization to raise over a half million dollars in its first year. What is more extraordinary to us is your willingness to dream big and to boldly envision a world without childhood cancer. We can’t explain it except to say thank you again and again, and state that this feels significant. It feels purposeful. Seattle is going to change the way pediatric cancers are treated and cured—in our lifetime. Thank you for your willingness to walk alongside of us in our grief and thank you for taking this next step with us. Your compassion, kindness and generosity are unparalleled.

We are excited, encouraged and looking forward to what will come in 2011. There will be much to celebrate and update you on in the New Year. You can keep up with what’s happening, as well as read excerpts of Carin’s writing, by subscribing to our blog here. If you are a facebook user, please join us there.

For now, we offer up this toast:

To all of you – with immense gratitude.

To our second year.

And to our beloved Ben.

*cheers*

Best Wishes in the New Year,
Jeff and Carin Towne

*Make sure to check out our home page, there is a clip of the King 5 HealthLink special that we were a part of this week on behalf of Children’s.

“On Christmas Eve many years ago I laid quietly in my bed. I did not rustle the sheets, I breathed slowly and silently. I was listening for a sound I was afraid I’d never hear: the sound of Santa’s sleigh bells.”

– The Polar Express

We saw The Polar Express for the first time on Thanksgiving night 2007, while we were in the hospital with Ben. It filled me with so much hope, in the way only cinema and orchestration can. I felt like if I just “believed”, like that hero boy, Ben would be cancer free – that he would live. And I would hear the sound of those bells of faith alongside the music of his laughter and freedom. A year later, we were watching it again with him, but with very different eyes – the analogy cutting deeply close to home. There was no more hope. A miracle was not going to come. Ben was not going to live – he would be taken. Each day we wondered in terror if “this” would be the day that something, or someone, would come to pick him up – taking him to where we could not go.

Two years later, there are so many emotions, but none of them are fear. For we know now that that train would come on December 30, 2008 at 2:15am. That is when Ben’s spirit left our house. In one last breath he boarded. Just like that little boy – in his pajamas, in the middle of the night, snow falling all around. And we were left here, but unlike the hero boy’s parents, very much aware of his absence and bombarded with unanswerable questions. Questions that have spent days, weeks, months and now almost years plural, circling my brain. What was it like for him when he left? Did he go right to heaven? Or was there a journey on the other side as well? Did he know where he was going? Was he frightened? Or did he just step on board? And what I am guessing all moms of dead children want to know is – who went with him? Was my Godfather Ron there? Was there a conductor? Were there strangers riding too? Our sweet friend Jenna was picked up a few weeks after Ben. As we watched it with Ryan for the first time I wondered if they road together, drinking hot chocolate along the way.

Most days I am able to believe that Ben indeed was transported somewhere magical, somewhere beyond our imagination, somewhere bright, hopeful and joyous. But I don’t know what that looks like. During the film the Conductor says, “Seeing is believing, but sometimes the most real things in the world are the things we can’t see.” That is true. And so excruciatingly painful when what you can’t see is where your child is. When what you can’t see is your child. There is no platitude that can bridge this kind of separation and make it feel better. Theological truths do not comfort absence as many would hope.

“Late that night I did hear sounds, though not of ringing bells. From outside came the sounds of hissing steam and squeaky metal. I looked through my window and saw a train standing perfectly still in front of my house.”

I wonder constantly when my own time would be. Will Ben know? Will he be waiting for me when I arrive? Or perhaps he will be allowed to ride with me. Oh how I hope so. With all my heart, mind and soul – more than ever – I hope in the power of Christmas. That the light of the world has indeed overcome death. That one day I too will get to ride that train – the one that will take me to my son.

We are excited to announce a new part of our blog and, in January, a new part of our website called “Stories”. Our greatest hope for this foundation is to be a voice for pediatric cancer research – a voice for children who cannot speak for themselves. We will raise awareness by telling Ben’s story and sharing what is happening here in Seattle at the Center for Childhood Cancer. But this narrative is bigger than Ben. It is bigger than what happened to him. It has to be. It has to be the story of thousands of people who decide that children should not suffer and die from cancer and therefore do something about it. 

Since our official launch in September there has been an incredible and enthusiastic response! We will be using “Stories” to highlight the ideas and ways in which people are making Ben Towne Foundation part of their family’s story. 

We look forward to telling you more in the new year, but first let us introduce you to Jeane…

***

Carin has been a dear friend since Middle School. I met her in Miss Peggy’s start room in seventh grade and knew we would always be friends. I know this foundation led by Carin and Jeff will be successful because they are so passionate and driven. I admire their strength and perseverance through an extremely difficult experience, and I want to help support them any way I can while keeping Ben’s memory alive. 

In trying to come up with an idea of how I could support them, I thought about the people in our extended community who know about Ben’s story but aren’t as familiar with the newly formed foundation. I wanted to get them connected. I thought about what I do in my daily life, activities and events I am involved in, and realized how easy it is to incorporate giving back and raising awareness into what I already do. I knew I had a forum to encourage others to learn about and support the foundation.

I host an annual holiday party and have asked my guests this year to consider donating to Ben Towne Foundation, and I have offered to match the donations made that evening. I feel that it is a small gesture I can make to help contribute, raise awareness and incorporate giving into things I am already doing. The holidays are about giving, celebrating and being thankful for all that we have in our lives. 

My hope for the evening is that we can spread the word about the research that Ben Towne Foundation is supporting and contribute to combating pediatric cancer. I know this cause is near and dear to everyone’s hearts that have children, and know Ben’s story. 

***

Thank you Jeane for a fantastic party on Saturday night!  We are grateful for your participation and vision. 

And Happy Holidays to you all, from Ben Towne Foundation…

I have been listening to Taylor Swift’s new album incessantly for a month now. Yes, it’s true; I am almost old enough to be her mother, in a Bristol Palin kind of way. And yes, most of her lyrical topics are about fairy tales, high school and heartbreak of the boy kind, but I adore her. I am envious of her life – writing her own music, headlining her own tour, wearing gorgeous clothes and having such a taut body. Listening to her is like momentarily escaping my middle-aged, sad, saggy-bodied life. My fabulous friend Annie wrote this about Taylor on her blog: “The only thing that I don’t understand is her dating life. From the songs that she writes, roughly 50% of her time is spent kissing boys on the sidewalk in the rain. The other 50% of her time is spent locking eyes with boys across the room at parties with twinkling lights. Is this what my life should look like?”

Well my life certainly doesn’t look like hers. It could not be more polar opposite in fact. But if I were to write a song right now it would be called “Back to December” as well. Only in it I would not be pining for Taylor Lautner and his Twilight Vampire Wolfy ways, but rather longing for my son and the last time he was here. “I go back to December all the time…” 

It is December – the month of Ben’s death. The scenes from the last days and weeks of his life play over and over in my mind throughout the year – most of the time I feel like it is December, even in July. You would think I would want to skip over this month altogether because it is so brutally sad. But strangely, it is also comforting – to arrive at the time of the year where the weather outside matches my heart, where our house looks the same as it did when Ben was last here. There is something holy about this season now outside of Christmas.

We didn’t think Ben would even be alive in December. On November 3^rd 2008, they gave us 48-72 hours most likely, as the swelling in his brain was occurring at such an alarming rate. But he was stubborn and determined. He fought hard. And in doing so, he gave us a blue print for how to walk through this last month of the calendar year. Though our hearts don’t feel like rejoicing and it is certainly for us not “the most wonderful time of the year” I think we were “lucky” that Ben lived as long as he did. For in doing so, he gave us a gift – amazing moments and last memories that we will always associate with this season.

As we decorated our tree last week, we remembered Ben and the sheer delight he had looking at each ornament as if he had never seen it before. We smiled and laughed at his abundant joy and commentary when we showed it to Ryan on video. As Ryan hung Ben’s special ornaments front and center on our tree, I stared at those Cars with tears and confusion – for I still cannot comprehend any of this, almost two years later. What happened? Where is he? He was just holding these ornaments himself. If I ran a finger print check his would still be on these I’m sure. I think to myself, “Ben was just here”, as I don’t want it to have been two years. And then my other three year old walks in, reminding me that he was not just here. But I go back to that December all the time…