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. 

For those of you who know us, you know that Jeff used to be a pastor at University Presbyterian Church. It was the church he grew up in, the church where we met and were married, the church in which he was ordained, the church where we baptized Ben and the church in which we publically mourned his death. That sanctuary holds much of our lives. And in it works one of my most favorite people in the whole world – the Reverend Dave Rohrer.

On paper you wouldn’t think we could be friends or that Dave could be one of my mentors. Dave does not watch the Bachelor, nor has he ever picked up a copy of US Weekly (for some reason he finds its journalistic integrity questionable) and I doubt he has any idea who Ryan Seacrest or Taylor Swift even are. His idea of a great vacation is camping, he is a fabulous cook and he gets his news from NPR. I, on the other hand, could care less who Henry Nowen is, or how Karl Barth differs from Calvin, nor anything about church history really besides Jesus. I would rather be at the Fairmont than a national park, I consider take out a culinary skill and I get the majority of my news from the E! app on my iPhone. BUT, we both adore Mad Men and have subscriptions to the New Yorker. So you can’t put either of us in a box I suppose. 

I have always appreciated Dave for his incredible wit, intelligence and most excellent preaching skills. But never would I have known how much I would come to rely on his presence, friendship and ability to enter our pain. From the time Ben was diagnosed until now Dave has been there. Strong, wise and present. He is 100% alright with our brokenness and remarkably does not attempt to fix it, glaze over it with platitudes, or insist that we will get better. In other words, he is okay with us not being okay.

When Ben relapsed in October 2008, Dave came over and found me in Ben’s bed. I was in complete and utter despair. I said to him, “I don’t know how to do this.” And then he told me the most profound thing – he said, “Ben will show you. Take your cues from him.” He didn’t correct my feelings.  He didn’t try to make it better. He didn’t dismiss my despair. He didn’t insist that God was with me, when His presence seemed so absent. Rather, he honored my son and gave me really the only tangible piece of advice. And Ben indeed did lead us to his death in the same way he taught us how to be his parents. 

If I were to give guidance to anyone who is walking along side a family who is losing/has lost their child here is what I would say:  Be like Dave.

When you have the urge to speak, listen. When you feel like your job is to point out the good news, wait.  When you have the need to wrap up our experience, please don’t. For real, loving care is the willingness to sit with someone and remain with them in their pain. To hear their fears and sorrow.  To say with your actions, “I don’t have all the answers, but I’m sorry. And I am here.”  

There is a wisdom and a self confidence that allows Dave be this way. To sit. To laugh. To let this be unwrappable. To say to us, “I will continue to come by as long as you want to see me.” And twenty two months later he is still coming by. We look forward to his monthly visits – as did Ben, as does Ryan. I have my People magazine on the coffee table for next time – just in case he wants to read about Brad Womack’s commitment issues.  But I’m guessing he’ll pass.