Last week Jeff ran into an old acquaintance while he was with Ryan, someone he hadn’t seen in years. The person asked him, “Is this…Ben?” How do you answer that? It is so strange to think that there are people whom we know in a distant context, or from other stages of our lives, that have no idea what has happened to us. “No, this is my son Ryan,” he replied as delicately as he could. “Ben actually died in 2008.” How’s that for a conversation ender? Awkward.

While at a doctor’s appointment the other day the nurse made small talk asking me, “Do you have kids?” “Yes,” I answered. She continued, “How many?” “Two,” I replied. She pressed the general chit chat further inquiring, “How old are they?” So I just told her, “Ryan is 2 ½ and my son Ben died in 2008.” Without skipping a beat she said, “Oh two is such a fun age.” “Yes it is,” I thought, “Until they get sick and die.” There was no acknowledgement of what I had just said. It felt so strange.

I have dozens of journal entries since Ben’s death of awkward moments. Like running into someone I knew from college a month after Ben died at Banana Republic. He was like, “Hey Carin! What is up?!?! What’s been going on?” I chose not to answer that.  What was I going to say?  “Oh not much…just buying some pants because my other ones don’t fit anymore… because my son just died.  What have you been up to?” Yeah…awkward.

The hardest part is that I know in these moments that it is more awkward for other people than it is for us – for we live this every day. The only person for whom Ben’s death and our new reality is 100% not uncomfortable for is Ryan – for he has never known anything different. He never knew us “before” – only “during” and “after”. Our ups and downs, our tears, our grief episodes and our incessant need to talk about Ben are just the way it is. I kind of look at it like a second language. He is growing up in a house/world where talking about death, heaven, sadness and a brother who isn’t here are as common as asking, “What’s for dinner?” Spending Christmas watching the Cars movie and planting flowers at Ben’s memorial for Mother’s Day may be our permanent traditions. And there is a part of me that hopes that because of this Ryan will be a more compassionate, generous and loving human being. The other part of me says I better keep a list of the best doctors in Seattle – Child Psychologist edition. For when other moms at the park watch Ryan waving at the sky yelling, “Hi Moon! Hi Ben!” I’ll admit…it’s kind of awkward.

Today Ben would have been five. I say “would have” because I don’t know if he is. Is he is 3 ½ forever or is he is continuing to grow and age? This is one of the many unanswerable mysteries that now make his absence so despairing. A trusted friend and mentor told me he believes everyone is in their prime in heaven – but I didn’t get the chance to know Ben in his adult life and that thought is traumatizing to me. What if he is older and by the time I get there and I don’t recognize him? Then I take a deep breath and remind myself that there is no way I could not recognize him. Those eyes. I will know him. What I should probably worry about more is if God will let me in after the amount of swear words I have uttered towards the sky over the past three years.  

But today is not as much about my eternal salvation as it is about remembering Ben. Five years ago today at 2:34pm he entered this world, forever sharing a birthday with our Cousin Janie. We had no idea the height of love and therefore the depth of loss we would experience. Our lives were changed because Ben lived. It is his birth day. It is not “Happy Birthday” – for “happy” no longer exists for us the way it used to. 

How does one celebrate your child’s birthday when they are not here? Last year we knew how to proceed because Ben made it quite clear before he died saying, “When I am four I get to have a Mater cake.” And so we had a Mater cake. This year has felt different in that we have no instructions and therefore we have felt very lost – as I suspect we will experience every year at this time. I thought, okay – maybe we should just get a cake. But then what kind of cake? And who/what is on it? Does he still like Cars?   We have 97 individual cast iron cars from the Cars movie. We could do more than one a year and still not run out! I decided to involve Ryan, but he isn’t quite old enough to engage in any kind of plan, nor understand celebrating a brother he does not know. So I took him downstairs to Ben’s Cars collection and attempted to be quick and specific. The conversation went like this:

Me: “Ryan, which one of these cars should we put on Ben’s cake?”
Ryan: “Ryan have a cake!“ 
Me: “Yes, but which car should be on the cake?”
Ryan: “Ryan have ice cream?” 
Me: “Yes.  Ryan, listen.  Point to which car we should use for Ben’s cake.” 
Ryan: “RYAN HAVE A CAAAAAAAAAAAAAAAAAAAAAAAAKE!!!”  

Needless to say the planning session ended in tears. 

Jeff and I finally made a decision. No cake this year. Instead we picked up a few of Ben’s favorite donuts from the Poulsbo Bakery this morning – “Gingi-mans” as he used to call them. I thought about putting candles in one, but again how many? Five? It should be such a simple question. I am his mom. I should be allowed to know this. I knew how many weeks he was when I was pregnant with him. I know what time he was born at. I know what time he died. And I knew everything in-between.  But I don’t know how old he is anymore.  

It is your birth-day Ben.  I hope you get to celebrate wherever you are.  We love you and miss you more than words could ever say.

A year ago Jeff and I were in uncharted territory. Ben was gone. Jeff had left his job. We took what remained of our family and left Seattle for three months. We spent that time absorbing Ben’s absence, experiencing the fullness of grief, and simply just trying to breathe. During those months we built a memorial, lived through what would have been Ben’s fourth birthday and tried to be as present for Ryan as we were capable of. Neither of us had any expectations of that time, except to try to survive. And on many days that didn’t even seem desirable. Tears were shed. Dirt was dug. Oars were paddled. And strangely, we discovered, time continued. Time does not heal, as Hallmark and good intentioned people would like you to believe. But time passes.  

And as it did we began to find words for our anger. Words for the injustice of what happened to Ben – to us. We (okay I) started to direct our rage less at God and more at cancer. And in doing so we began to intentionally think. We wondered if we might play a significant role in bringing awareness and funding to pediatric cancer research. It was not so much about turning something horrible into something good, but more so a determination that was birthed. A confidence that grew. A vision that took shape.    

We returned to Seattle and spent the next six months with trusted advisors learning as much as we could. We talked to oncologists, scientists, development experts, business persons and more. Each individual gave their time, kindness and expertise to us. Each conversation brought more clarity. Each step made us ask, if people like ourselves, who understand the brutal reality of childhood cancer don’t step up, then who will? We met other parents who had lost their children to variations of this disease. Their pain, loss and the devastation that was now their lives were similar to ours. It didn’t matter the type of cancer, for at the end of treatment a child either lives or dies. It is that black and white. Slowly, but surely, the mission was becoming clear. This was not just about neuroblastoma, though we obviously care deeply about defeating this particular disease – but about all childhood cancers. And because of the compassion and generosity of some supporters – our vision, and thus this foundation, became a reality. 

So here we are a year later. Many waters have been crossed to arrive at this point. The start of this mission does not erase where we have been. The progress that will be made in the future will not change the outcome of Ben’s life, nor the immense sadness we feel daily without him. But it will change lives. It will change the face of pediatric cancer. It will be bring cures. It is bigger in scope than we could have imagined, but then again – we never could have imagined any of this. Are we crazy to think we could play a significant role in curing childhood cancers? Probably in some people’s minds – for it is an audacious thought – but not in ours. For once you have watched your child die with your own eyes your scale of what is crazy, and what is not – is completely different. We have seen the worst – and therefore are freed to dream with no limitations. And so we are dreaming of a day when all childhood cancers will be cured. 

That is how it began – in a nutshell. I look forward to writing about how it will continue…