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…

Today Ryan is three. It seems impossible. We were just celebrating Ben’s third Birthday. And yet, in approximately five months Ryan will have out lived his brother. I loathe that day. But on this day, November 28th, I offer up thanksgiving for this boy. For his life. 

In the darkest moments since Ben’s death there has only been one person who has the ability to pull me out of complete and utter despair: Ryan. His laughter, his smile, his joy, his abundant energy have been flotation devices along the way. He is funny and sweet (except when he is not). In his bright blue eyes I see hope. Ryan’s presence does not erase Ben’s absence. His laughter does not wipe away our sorrow. They co-exist, the bitter with the sweet. They share the same breath now. But we have been grateful for his life and the ways in which he is willing us to survive.

I am trying to be present in my grief. I am attempting to use the “proper” mediums to work through this journey: our support group, our therapist, and our friends. I want to be present for Ryan, to love him for who he is, to let him live his own life – separate from Ben. But the reality is “Ben” is everywhere. His death is the defining moment for our family. That is our reality, it is our truth. It is how we live into this truth that will determine Ryan’s ultimate health and well-being. I am well aware of this. And yet, I am also aware that without him I would have surely drown. How strange to be saved by a boy who doesn’t even know how to swim.  

I am conscious that this is a lot of pressure for one so small. Sometimes I am thankful that he doesn’t know the magnitude of our pain, as he bounces joyfully and endlessly through our house, but mostly I am profoundly saddened by the fact that he will never know his brother in this time or space. He will know loss and the loss of Ben will affect him – I know this. But it will be the loss of not knowing him – the loss of no conscious memories. And that is different. 

We will do our best to fill in some of those memories for him. We will tell him about his 1^st Birthday. About how Ben was so very sick, but he held on. He even picked out a cake for him – “Sally” from the Cars movie. Ben told us that someday Ryan would turn three and be a big boy just like him. 

And two years later, he is indeed three. We will celebrate this milestone of Ryan’s today with our families. Our little city slicker wanted a John Deere party, so John Deere it is. I even baked cupcakes for the very first time, “chocolate and yeh-yow”, per Ryan’s request. But don’t think I didn’t consider calling Trophy.

Happy Birthday to our sweet sweet Ryan. 

When your child is diagnosed with cancer you become a member of the parents of kids with cancer club. No one else can understand your life except those in that club – not your friend’s aunt with breast cancer, nor your brother’s best friend who had leukemia – those are different and unique clubs of their own – each with their own challenges and fears. For parents in this fraternity there are only two clubs to graduate to: parents whose kids have survived, by some sort of luck of the draw – and parents whose children did not. When Ben left us we graduated to the worst club, one whose members we didn’t want to know, one whose membership does not expire. We became members of the “Dead Kids Club”.  

A little over a year ago Jeff and I decided to join an official local Dead Kids Club, also known as a “grief support group”. It is sponsored by Children’s Hospital through their Journey Program. As the date approached for our first meeting, I wondered what kind of people would come to this sort of thing. Clearly cancer and disease do not discriminate – as we saw during Ben’s treatment. Every race, religion, economic status and more were all clearly represented. So surely those whose kids died would be from all walks of life as well. As we arrived that night I was pleasantly surprised by how many lovely people were there. Lovely people who were living in hell. Each one carried their own pain so acutely I thought the walls of the conference room we sat in would explode. How could it possibly contain us all?  Yet somehow it did – kudos to Sellen Construction. That first night we all shared the cliff note version of our kids – of who they were, of how they were taken. They were all taken against our wills. Taken by cancer, by epilepsy, by mental or physical disability. Taken.

As I have listened to these friends for the past year, I have been reminded of what I already knew in my heart – that no one can fully understand what it means to lose Ben. For no one else but Jeff loved him as much as I did, and our relationship with him was unique. Similarly I cannot comprehend completely what it meant for them to lose their child – for they were theirs only. But these parents understand the symptoms of being separated from Ben: intense pain, unbearable sadness, shattered dreams, lost faith, indescribable longing, lack of control, insanity, depression, and so much more. And in their understanding there has been some sort of communion.

Our grief group is unlike most other support groups. Often times I have thought that I would rather be in AA, or any type of 12 step program really. For in all of those support groups you can actually “do” something to change your situation. You can work towards not drinking, not gambling, or overeating, etc. Not that there isn’t pain and struggle associated with those issues – I know there is. But the problem ultimately with our situation is that you can’t change anything about it. This isn’t the recession. We can’t wait it out and hope our stocks will recover at some point. This isn’t a bad break up where eventually you find a better mate. We can’t work toward a better behavioral outcome. This is the death of our son. And he is not coming back. So really, our group is a “coping” group. Just a group of parents trying to make it in their day to day lives without their children.

You would be surprised to know that we laugh a lot there. There is a dark humor that we share together.  I am grateful for that because I said to Jeff that first night, “If they can’t laugh about the ridiculous parts of this with us I don’t think I can go.” Luckily for me they did – and so much more. Many thanks to my Dead Kids Club.  For listening, for crying, for laughing, for understanding.

Guess who called me last week? President Obama!! Here is what he said: “Hi. This is Barack Obama and I am calling on behalf of…” I think he said something after that as well but he lost me at “on behalf of”. You can imagine my sinking disappointment as I realized he wasn’t actually calling for me. He wasn’t inviting me to join him, Michelle, Sasha and Malia for Christmas at the White House – where I would sit with them and gaze jealously at Carrie Underwood and her Barbie-like physique. He seemingly left out the part too where he says, “…and Air Force One will be picking you up at 09:30.” There was no makeover involved, or a swing through Chicago to meet Oprah, nor an invitation to have cocktails with Keith Olbermann. Needless to say it left me in quite a depressive state. Following his call I also was phoned by Patty Murray, a school teacher in Issaquah, Kate from the Sierra Club, those for 1100 or 1107 (I can’t remember which) and those against it, and various others – multiple times.

Today though, finally, my home phone is silent. It is almost eerie. I am so thankful that we have reached the end of the political campaign season. My voicemail (and smail mail) just can’t take it anymore. Here is one thing I can promise you: Ben Towne Foundation will never robo call you – ever. No matter how big we grow, you will never pick up the phone and hear (in a higher register than my own), “(pause) Hello. I’m Carin. Mother of Ben. And founder of Ben Towne Pediatric Cancer Research Foundation. Thank you for your recent donation. (pause) Goodbye.” 

We value our donors and hope to treat them each with honor and gratitude. We know you have a choice where to invest philanthropically and your decision to support the work we are doing is greatly appreciated. You have given generously and overwhelmingly as we launch into this new endeavor. As we approach this season of giving, we want to say thank you again and remind everyone that as your companies and friends consider end of the year financial giving, host holiday parties and make decisions for future charity involvement, we hope you will make mention of our foundation and help us tell the story of what is happening here in Seattle: that there is hope in the future of treating and curing childhood cancer.

At times, I have started to feel like a politician myself, for I am repeating this message over and over. But I can’t help it. For this is something we actually can change! This isn’t about a political party, who is taking money from lobbyists, which candidate is telling the truth, or who will restore Washington. We’re not throwing the word “change” around because it is a good sound bite – this is about changing the way kids are treated and ultimately cured from cancer. It is a platform we can all agree on. Republicans, Democrats, Independents, Blue States, Red States, People who drink Tea, People who prefer Coffee, and yes…robo-callers too. Together we believe truly that “Yes we can!”

I am Carin Towne and I approve this message.

Like all kids growing up I loved Halloween. I was (and still am) something of a candy addict, so any holiday that centered itself on artificial chewy goodness ought to be celebrated fully I thought. I would binge through my entire basket within the first few days (okay hours) and then proceed to steal one piece at a time from my frugal sister Kim’s plastic pumpkin hidden in her closet (years ago I came clean and confessed this to her). As an adult however, I still held an appreciation for the annual candy binge, but I started to think it was a bit odd that kids dressed up in random costumes, walked around neighborhoods in the dark and asked strangers for treats.    

The first Halloween Ben could begin to grasp the concept of such a celebration was spent in the hospital getting chemo, which ironically was colored bright orange. The next year we were home. We were 48 hours into his catastrophic relapse, having been told that he would not survive this disease. But he didn’t know this – or if he did it didn’t seem to bother him – so answering the door at our house was very exciting for him. My cancer filled son, with tumors in his head, organs and bones spent the evening passing out candy to the healthy kids, exclaiming, “Congratulations!” when he opened the door. I listened from my bedroom upstairs, as I couldn’t bear to witness such vast unfairness. 

Perhaps as Ryan gets older I will find myself enthralled in the sugariness of it all once again, as I get the chance to see it through his sparkling blue eyes. But it will take time. And right now I cannot separate this weekend on the calendar from my memories of Ben’s relapse. The irony of Ben’s death sentence taking place during a holiday weekend which is primarily for children is not lost on me. Therefore as it is rapidly approaching, I find myself loathing it – especially as I have been seeing houses in our neighborhood decorated with fake grave stones and skeletons. WHY DO PEOPLE DO THIS??? It must be soooo much fun to pretend that someone died at your house or that there are ghosts hanging around where you live. But guess what? My son DID die in my house. Maybe I should stop dusting his vacant room and let the cobwebs grow as they will. We could host our own haunted house! Those parents who find skeletons and gravestones entertaining could come through while I hide in the closet whispering spookily into Ryan’s play microphone, “Yoooooour child tooooooo can get cancer and diiiiiiiiiiiiie…..HAHAHAHAHHAHA!”

There is nothing fun or funny to me about death – pretend or real. You want to be scared? Try hearing the news your child will die. But decorating your house as if someone died and is now buried in your front lawn is completely insulting to me. Why can’t people just put a cute pumpkin by their door?  Or a sweet scarecrow?  How about some fall mums? 

Some might say I am being a little oversensitive. Perhaps. The empty twix wrappers surrounding me on my desk would seem to say I am “having a moment”. Hopefully I will not come to find one of these families was adamantly against the hospital’s expansion or I might light their entire lawn on fire. 

In the meantime, I am looking forward to the post-Halloween sale on candy corn. No one in our house is being deprived of treats – just our other family member.

(and yes, these candles can be yours at Pottery Barn!)

The other day while at a park with Ryan, I had the most disturbing interaction with another child. A little boy who was probably seven or eight was running around with a large stick shouting, “I will kill you! I will kill you with this stick!” It was alarming for two reasons: one he had no parents present – as far as I could tell - and two, I have never heard those words (with that tone) from any little boys I know. He did not say this directly to Ryan, but at one point he ran towards him intently with his self proclaimed weapon. I instinctively picked Ryan up faster than an Olympian, my body language communicating quite clearly, “You touch this child and you will die.” Thankfully after I told him that was not appropriate behavior here (or anywhere) he dropped the stick and wandered off. 

As he made his way to the other side of the playgound, I continued to watch him. And as I did a strange thing happened. I felt like I was losing my mind (an ongoing theme) because I started to see him as a cell – like he was cancer itself. Those words taunting me over and over, “I will kill you… I will kill you… I will kill you…“, taking me back to the reality that I could not protect Ben. That cancer had flagrantly moved through his body like an evil little unsupervised child, behaving in a way which was demonstrative. I could put my literal body between Ryan and this child. But I could not do that for Ben. And some days that helplessness still sends me into a rage.

Rage is very accessible feeling for me. Maybe it is for all mothers – but especially for moms of dead children. And in a moment my heart was beating crazy fast. I wanted to scream out loud at the top of my lungs, “**** you Cancer!  **** you for taking my son!  You have messed with the wrong ****ing Mom.” If this little boy had actually been the disease itself I would have killed him with my own hands. Sadly now, I know lots of moms who would have backed me up. Kind, beautiful, smart, loving moms that would have done anything to save their child. That is how fiercely a mother desires to protect her kids – and how maddening it is when you cannot. When something so evil and so destructive creeps into your baby’s body and there is nothing you can do except pray that the chemotherapy will do its job. But sometimes it can’t. Some cancers are too resistant – as was the case with Ben’s neuroblastoma.

Anger is one of the hardest elements of grief because there aren’t many socially acceptable ways of working it out. Most days I am able to contain it – I am trying to channel it productively with our foundation and the work we are doing. But it is difficult because what you want to do sometimes is hurt someone or something – to cause damage equal to the damage that has been done to your heart. Yet I know I could never achieve that. For I still wouldn’t feel any better because Ben is gone. Instead, I would probably get arrested and jailed – spending the remainder of my life with neither of my children, dressed in orange with bad hair. 

I know I can’t get to cancer myself – that I cannot inflict my wrath upon it personally. But I now know scientists who can. They are the ones who are going to take this fury and our crazy need to destroy this disease into the lab and figure it out. And then there will be a day in the future when even cancers like neuroblastoma will not be able hide, for they are going to teach children’s bodies how to kill it themselves – one cell at a time.