archive
july 17th
Today was Ben’s birthday. He should have been six. We have now spent three birthdays without him – equal to the amount we spent with him. How can that be? I expected by now that it would feel easier on this day. But that was naive – it doesn’t. How could it? He is our son. And he is dead – the opposite of birthdays. There is no theme, no friends, no presents, nor candles to blow out. Instead, every year on July 17,we will be left imaging what could have been – what should have been. Trying not to overdose on something that would allow us to spend this day with him.
Tonight we attempted to “do” something to acknowledge this day. We went out to dinner at one of our favorite spots with Ryan. Checking into a restaurant the hostess asked us, “Three of you?” “Yes”, I replied. Just three of us. I wanted to stop her and say, “There are supposed to be four of us! But our son is dead. This is his birthday.” Perhaps she could still throw in the free dessert? Instead, we followed her quietly to our table.
During our meal we tried to talk about Ben, but for Ryan it is confusing. “Why is it his birthday?” “When is he coming back?” “Why is he in heaven?” In the midst of our conversation I told him he had to eat all his vegetables if he wanted to go to ice cream afterwards. He quickly proceeded to stuff them in his mouth all at once, thus gagging himself and vomiting all over the table. Niiiiiice.
I suppose that was appropriate though. Our life is messy. Even when we attempt to “celebrate” it is just so very hard. We have released purple balloons every year on this day in memory of Ben. As we struggled to do it again tonight, Ryan – done with the day – started crying, “I want that balloon back! I want that balloon baaaaack!!!” The whole notion of an offering or a birthday for a brother who isn’t here just doesn’t make sense. It doesn’t to me either. I want my son back.
Yet, as I stared at Ryan tonight after he fell asleep, my heart felt grateful. Thank goodness there are three of us. For if it were just Jeff and myself, I am pretty sure in the wake of Ben’s death we would have destructed completely. But as it is, in some show of grace and mercy we have Ryan. There are three of us. Three of us trying to make it as a family. Attempting to acknowledge this day in some special way.
Better luck next year.
“Happy” Birthday Ben. Six years ago today you changed our lives forever. We miss you like crazy. Emphasis on crazy.
*On Tuesday registration for our benefit 2011 begins. Please check our website for details…
grand opening
Last night I had the honor of emceeing the grand opening of the Center for Childhood Cancer Research. Though they still have some final machinery to move in in the next couple weeks – the Center is now open. The work will finally begin. To say it was emotional night would be an understatement. The combination of Ben’s approaching birthday and the incredible amount of hope and belief that we have in Dr. Jensen and the future of treating and curing pediatric cancer was at times so overwhelming I thought my head and heart would literally explode.
Doctors, oncologists, researchers, donors, friends, Seattle Children’s advocates and more gathered at the Hyatt before moving up the street to the Center for tours. The buzz was palpable. It was as if you could hear, see and smell hope. To be a small part of that hope was an honor.
The chance to see many of Ben’s doctors and care team in the same place was bittersweet. I wanted so intensely to run up to them and say, “We’re not sure how this dose of such and such is going…” for that would mean Ben was here and we were still taking care of him. His absence in their presence felt so very wrong. I was, however, reminded of how well he was taken care of – though the outcome might say differently.
But it is a new day here. As Seattle makes it mark on global health – pediatric cancer research will be represented. We stand firm in our commitment and support of the Center for Childhood Cancer Research – believing that from this institution we have the ability to change the meaning of cancer for children everywhere.
Thank you to all of you for your continued incredible generosity!
Some PR from this past week…
http://mynorthwest.com/?nid=11&sid=512301
KIRO Radio – My Northwest
A Seattle couple has experienced the horrific pain of losing their three-and-a-half year old son to cancer. But instead of asking “why him or why us,” they’re focusing their energy on finding a cure for the leading fatal disease among kids. (more…)
tension
It is hard to believe we have crossed the one-year anniversary of when we launched Ben Towne Foundation. Though the official celebration wasn’t until September, as of July 1st we were up and running! So much has happened in this first year. It has been beyond our imaginations. We are grateful that you have remained with us – continuing to invest in our story and willing to participate in this new chapter.
When I think back to Ben’s diagnosis, our cancer journey, and how we shared about his treatment and life on CaringBridge it seems like a lifetime ago. I went back to that blog the other day to re-read my own words and in a second I returned to our old life – reliving everything as if it were yesterday. It is still unfathomable what happened to Ben – to us. And to be honest, it is challenging to know how to use this blog here now. So much of our life has been shared publically. But it feels like right now we are at sort of an impasse. Everything with the foundation is exciting and moving in huge ways – and for that we are thankful and motivated to continue our endeavors. Yet on the other hand, our grief and longing for Ben remains – at times as surprisingly intense and dark as ever. I often find myself still thinking, “This is not survivable,” or, “I can’t stay here another minute without him.” But then something fantastic happens and I am momentarily lifted.
As the spokesperson for much of this, I feel this great tension. I want to shout about the good things that are happening and I hope you can sense the momentum that is taking place in this city. It is amazing. But I also want to share how we are doing in the aftermath of Ben’s life – as a family. For I feel like that is an important a part of the “awareness” piece – to know what childhood cancer does to the families from whom it brutally takes. Yet, it is difficult for me to know that you – the innocent reader – will open your email, or click a link on facebook, not knowing whether you’re going to read about the sweet girl scouts selling lemonade or my strong desire to die and be reunited with my son.
For as exciting as everything is right now professionally with the foundation – at the end of the day, it is happening as a result of our son’s death. That is a tension we are going to live with for the rest of our days here. But how much of that strain to share publically leaves me in a quandary. I continue to write privately, as it is for me a way to express my grief and crazy longing for Ben. But what is an appropriate amount to share here on this blog? Would it be better suited for some other medium? Or just in my personal files? What do people want to know from us? There is a part of me that assumes you only want to hear the good parts – for our life is just too sad. Yet, that would not be the whole truth – and I believe it is “truth” that creates response in people. So it is an open-ended question for me. I suppose we will just continue to try to balance this tension one entry at a time. But as of late I have been so frustrated by how to proceed that I thought perhaps it was best to just acknowledge this tension.
So there you have it.
