I'm living with the guilt. In fact, it even feels wrong to say living with the guilt when the reason I feel this way is that others who have walked our path aren't living.
That is certainly not to say that I want to switch places with them. I want nothing more than to ease their pain.
Survivor's guilt is best described as that terrible feeling that you are a terrible person for surviving a terrible event while others around you have not. There is this dull notion that you are undeserving of health and happiness. You, as a parent, are likely at some point to have this feeling if your child is disease-free while another grieves the loss of their own child. I'm here to tell you it's normal.
There are two specific chapters in my life: B.C. and A.D. Anything October 22, 2009 and earlier is B.C.- before cancer. Everything October 23rd and on is A.D.- after diagnosis. Life B.C. was easy in the grand scheme of things, no matter how I felt at the time. Life A.D. will forever be Life A.D. There is no going back. You eventually organize the cards you were dealt and figure out your new normal. And in everyday life you may eventually learn to appreciate your new perspective when something less than ideal happens, that may have been simply unbearable in Life B.C. In Life A.D., you'll forever have the phrase, “Hey, it's not cancer.”
I remember with vivid agony the questions of “Why our family? What did we do to deserve a cancer diagnosis when everyone else is out there is enjoying a world that keeps on spinning?” The truth is, it wouldn't make life any more fair if it were another child being diagnosed instead of mine. Childhood cancer is one of the rare instances in which you say you wouldn't wish it on your worst enemy and actually mean it. And another truth is that kids do absolutely nothing to deserve cancer. So spare yourself the guilt of thinking you had a hand in your child getting sick; trust me, there will be enough guilt later to make up for what you forgive yourself at diagnosis.
And now Why our child? is replaced with Why not our child? when I stare into those empty eyes of someone who has lost a person they should never have outlived.
Of course losing my daughter would not have made me feel any less...guilty. Losing my daughter would do nothing to bring back any of the children who have lost their lives to cancer. So why do I insist on carrying this unwelcome feeling around with me? Why do I replace Why our child? with a new version of Why our child? Why is our child one of the lucky ones? I don't know. But I'm thankful every second of the day that she's a survivor, even though I only wear the screen-printed MY CHILD SURVIVED CANCER! t-shirt at home when I'm by myself.
I belong to a Wilms tumor list-serv and have followed the progress of countless children online. When a child is first diagnosed with cancer and their parent finds their way into our exclusive club, I want to reach out and tell them, you will get through this. When a child relapses, I pray for recovery. When a child passes, I send condolences. When a child is declared N.E.D. (no evidence of disease), I celebrate. But when my child has a clean scan, I keep it hush-hush.
I know deep down that I should be screaming those three glorious letters (N.E.D.! N.E.D.!) from the roof tops, but I can't bring myself to publicly celebrate when others are mourning. And not only do I feel guilty about others suffering while we're overjoyed with good news of no cancer, I feel guilty that I'm not screaming it from the roof top. Will others think I'm taking Eve's good health for granted? Will Eve think this news is not newsworthy?
No matter how many times I tell myself that I will NOT feel guilty that my child is doing well, I still do. But it's something I'm working on, and sometimes it's my friends that have lost their children who are the ones to beat me on the side of the head and tell me to snap out of it.
(Ok, at this point you can add feeling guilty about needing a bereaved parent to make me feel less guilty to the list.)
A friend who lost her daughter to the same disease my child had reminded me that people need to see your child doing well. It's a funny little thing called hope; when you walk into clinic with your newly-diagnosed kid, you need to actually see some healthy children running around the lobby as they wait for their follow-up appointments. You want to see that yes, your child's hair can grow back. Yes, your child can get some color back in their cheeks. Yes, your child can one day skip around the waiting room free from IV poles, hand sanitizer, and face masks. There is hope that your child can survive this. I had to be told that my child can give hope to others. I won't feel guilty that I did not come to this realization on my own because honestly, I have too much on my plate to feel guilty about.
Tomorrow we take Eve for scans so I can let a little hope loose at Duke. You can always see hope running at you. Hope always wears a tutu.
Although I still don't post on the list-serv when scans are looming and update everyone when said-scans are clean, I've been given permission from my friends to do so. I've been told that they rejoice every declaration of NED as much as I do. I've been reminded about the studies that their children were enrolled in are continuing to save lives, and they celebrate the victories in order to keep their kids' memories alive. Because scientists have learned something from every child enrolled, no matter the outcome, those results continue to improve the chances of all children fighting cancer. And my friends know that their children didn't die in vain if we learned something new in pursuing treatments that will save more lives with less side-effects.
Maybe I need to be honest with myself and accept the fact that it's not quite the word “guilt” that I'm looking for, but more of a deep sorrow. I'm not so much as guilty for having a child who survived in spite of the children who are passing, but am colored in this profound sadness. And that makes it easy to scale back on the ticker-tape parade that I swore we'd have when my daughter was labeled a survivor.
One realization that hasn't failed me yet is that there's always another perspective around the corner. So for now, I'll work on laying off the guilt. Because if something else happens and I didn't take the time to scream from the roof tops how happy I was that we had this good chapter of our lives, I'm going to feel extra-guilty.
Like, OMG I seriously just ate four servings of nachos when no one was looking-guilty.