This envelope arrived in the mail the other day. It was at the bottom of a large batch of coupons and catalogs. When I saw it my heart literally seized for a minute. I stood there staring at it – and in a brief moment of denial I prayed quickly that someone was writing to inform us that this was all a sick joke. That Ben was well – that we could come pick him up. Enclosed was his school registration form or spring little league handbook.
I quickly ripped it open to find a survey from Children’s Hospital regarding the stressors of having a child die from cancer. *deep breath* Tears immediately burned my eyes. How in a matter of thirty seconds can my mind make me so crazy? I swear there are still days where I feel like I am going to be committed – that I won’t mentally survive this. How is your mind supposed to sort this out? On July 17, 2005 I gave birth to my son.Yet, I sometimes feel like I have dreamed his life – that he wasn’t really here. For the farther we get away from December 30, 2008, the more fuzzy many things are becoming. It is hard to remember his voice, his laughter. I can no longer with sense memory remember his touch, how long his body was next to mine or what he smelled like. I don’t have to remind myself anymore to not check on him after I put Ryan down. I don’t pass his room anymore thinking he will be there. I no longer hear his voice calling out to me like a ghost. His absence has sunk in. It is no longer shocking to me…until it is. Back and forth, back and forth like a tennis match of madness.
So seeing “To the Parents of Benjamin Towne” was simultaneously the worst and best combination of letters I could read – a reminder of the gapping loss we feel daily and a confirmation – yes, you are Ben’s mom. Yes, he was here. The scar on your abdomen is real and not a tummy tuck (which is unfortunately needed). We are still Ben’s parents. We just don’t have the same job description as we do as Ryan’s. But we are his parents, and therefore it is our job now to honor and remember him – to redeem in some way what he was forced to endure.
So many people have tried to wrap up the work we are doing. They say things to us like, “It’s so amazing that you have turned such a tragedy into something so great.” But I don’t see it that way – at all. I see it as advocating for my son – or rather against his suffering. I see it as my friend Karen so eloquently wrote about her daughter Katie:
“I went into the world of cancer with her, and then she went out of this world without me. I didn’t know how to live in the “former world” without her, so I moved instinctively into the world she left.”
This is where Ben left us. And as much as I want to walk away from our work on many days and just give cancer the finger from afar, I can’t. So we will continue to speak on his behalf. We will continue to tell our story in the hopes that it will bring change. We will continue to direct the outrage we feel – that cancer took our son in a brutal way – toward reseach. And instead of school packets or sports registration materials – we will receive grief surveys. Because we are Ben’s parents.