Donna’s Cancer Story: Family Portrait

This is the twelfth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of treatment. 

Family Portrait Two

 (photos courtesy of Nicole Radja, Studio Starling, Chicago)

There we are in all our glory — our first formal family portrait.  Ever.  My hair was working that day, which is always a bonus on family portrait day!  We were never ones for formal sittings, either together, with Donna, or even Donna alone.  Our candids were lovely, and we have some amazing amateur photographers in the family.  We just never felt the need.

But cancer changes everything and with the end of Donna’s treatment, I wanted to mark the occasion.  I wanted to document, with photographs, just how we were feeling and what we had done as a family, what we had accomplished.  The anniversary of Donna’s diagnosis was just weeks away and, Lord, what a year it had been.  I am grateful to my cousin, the photographer, who came to us, equipment in tow, so Donna did not have to sit in a studio, which, given her still compromised immune system, would have been ill advised. 

Anniversaries always bring with them the opportunity to think and reflect.  Certain dates just carry more weight, for better or worse.  Whether I was ready for it or not, the anniversary of Donna’s diagnosis was upon us and it was throwing me for a freaking loop.  I was equal parts relieved and panicked, exhausted and energized, hopeful and fearful, happy and angry, guilty and entitled.  Each of those dichotomies had Donna’s cancer at their core.  Dichotomies will drain the living life out of you, and that’s what was happening with me.

I stopped journaling for about three weeks during Month 12.  That was a mistake, as the caringbridge community acted as a lifeline to us during Donna’s illness.  When I needed the support most, I turned away from asking for it.  There was lots happening that contributed to that, but at the crux were two losses refusing to be ignored any more:  a miscarriage from Month 8 and the loss of my career.  With Donna’s cancer gone, it was like I had woken up and found myself in a completely different landscape.  I didn’t recognize myself or my life.  I felt lost, angry, resentful, and whiny.  I wrote about it here, just a week before the anniversary:

“The common denomintor with all these sad stories is the guilt felt for feeling anything other than gratitude and relief.  So many children never get the opportunity to finish treatment.  I hate myself for wallowing and feeling bitter and angry and sad and lost when somehow I managed to not feel those things during Donna’s diagnosis and treatment.  There is an unspoken sense that when one’s child has finished treatment, you’re simply living life to the fullest and enjoying each second with your family.  The truth, my truth, is that I’m struggling.  I miss my old life and what I had before the mass in Donna’s head was diagnosed.” 

When I finally opened up the floodgates and wrote about what I had been feeling, when I ratted out the HR personnel who had acted so coldly professional in terminating my employment at a position I had been at for over eight years, a place that felt like a second home to me, when I opened up and acknowledged the loss of the miscarriage, a loss not enough women talk about, I felt better.  Writing helped.

As we were no longer operating in crisis mode, I had time and freedom to wallow.  I had time and freedom to feel the hurt that losing my work and career was causing.  I had time and freedom to worry that the miscarriage and Donna’s cancer were signs that I could only produce dying or dead children.  Sometimes time and freedom suck.

In retrospect, I know that it was only after Donna was safely out of immediate danger that I allowed myself to feel these things.  What I was doing was emotionally intuitive and adaptive, but Lordy, it hurt.  I took a cue from Donna and tried to do what she did just before a needle stick:  feel what you feel, express it loudly, embrace it, and move on.  Donna never shied away from her feelings.  From fifteen months she could tell us she was frustrated or angry or sad.  She knew that when she identified what she felt and told those she loved, it helped.  Only then could she move on, and she did.  

Family Portrait One

Family portraits are an interesting thing.  I always kind of looked at them with a bit of snobbish disdain.  I found them false and forced and fake; atificial.  I don’t anymore.  I’ve grown wiser in my old age.  Now I love them.  They tell a story; they tell a dream.  Sometimes they capture the story you want to project, sometimes they capture the other story — the one you’re trying to hide.  My heart breaks a little whenever I see these photos.  I ache for the family that was.  I want to protect our naivete.  While I can’t do that, I can remember the family we were.  I can see our joy and our love and marvel at Donna’s beauty and light.  All of those things are intact.  Still, today, intact. 

Family Portrait One

Tomorrow:  Spring