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.