Chronicling a Child’s Illness and Finding Transformation

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JudithHannan_photo-524x800The SFA is delighted to introduce guest blogger Judith Hannan, who has been a writer for over 25 years.  She is the author of Motherhood Exaggerated (CavanKerry Press, 2012), her memoir of discovery and transformation during her daughter’s sarcoma cancer treatment and her transition into survival.  Ms. Hannan’s daughter Nadia was presented with the SFA Courage Award at the SFA Annual Gala in 2010.  She is a featured speaker, a teacher of writing about personal experience to homeless mothers and at-risk adolescents and we are pleased that she has agreed to share her insights about her journey and beyond through a blog series.

Stories are antibodies against illness and pain.   

–  Anatole Broyard

 “Owee.  My jaw cracked.”  It was October 31, 2000 and my eight-year-old daughter Nadia  had bitten into a piece of her Halloween candy, unaware that a rare bone cancer, Ewing’s sarcoma, was about to be revealed. What followed was intensive chemotherapy, multiple surgeries and hospital stays.  But the deeper event was the transformation I went through as a mother and in my relationship with Nadia.  Even before her diagnosis, I wasn’t sure I knew how to raise Nadia.  She challenged me with existential questions about death, she told me she used to be my mother, she refused my help by repeating her first and most frequently spoken words, “I do.”  She begged me to watch her, not help, as she mastered one skill after another, not as if she were learning them for the first time but as if she was being reminded of what she once knew.  But as I began to shepherd Nadia through illness and into survival I began to discern what she needed me to be.  My book, Motherhood Exaggerated, is my chronicle of that journey to awareness.

Since my book was published, the most frequent question I am asked is why I wrote it.  My immediate response is that I am a writer, that’s what I do.  When an event burrows deeply into my life, I have no choice but to tell the story.  Throughout Nadia’s illness, I recorded my thoughts nearly every day, and I continued writing in the years that followed, until her survival was something I could count on.  But that doesn’t completely explain why I wrote a book, which requires an impulse that goes beyond recording events and ruminations.

The second reason is to be a mirror for others.  One of the first non-medical outings Nadia and I took after she finished treatment was to our neighborhood bookstore.  We were searching for ourselves—she, a young patient; me, a mother of an ill child—reflected in the tale of someone else’s experience.  As the late author Reynolds Price wrote in A Whole New Life, his chronicle of his treatment for a spinal cord tumor, “I needed to read some story that paralleled, at whatever distance, my unfolding bafflement—some honest report from a similar war …”   But Nadia and I were searching a desert which held no thirst-quenching elixir for her and very little for me.  There were many books about autism, a few about eating disorders, and none about a mother caring for a child who survived a life-threatening illness.

Books about death and grief were more plentiful; perhaps the extreme tragedy makes it more impossible to resist telling the story.  While these books are important and need to be written, they are shaped by their grief.  I was looking not for an ode or elegy but for a messy and uncertain narrative.  I knew I had to write my own story.  At the time, I was still so connected to illness and hospitals that my initial narrative was self-centered, the writing style overblown because, while the storm that had roiled my emotional ocean had passed, the waves shuddering through me were still large and white-capped.  It was not much more than a disguised daily journal.  I wasn’t telling a story about people but about Broviacs, IVs, scans, chemo drugs, etc.

I saved those initial ramblings until I was ready to weave them into a larger picture.  I knew I would have to write about my own mother and how she raised me, about my relationship with my husband, about being a mother not just to Nadia but her older sister and twin brother.  I had to write about the role of faith and the solace I had once found in nature.  I waited three years, when I thought I had moved beyond my narrow understanding of events.  I was ready, I thought, to meet myself on the page, to write the pain with honesty and without flinching.  But the person I met there wasn’t very nice.  I wasn’t being brutally honest, just brutal.  I was writing without compassion and so was blind to any understanding of how I had become transformed.

It would be another five years before I could tell the story that needed to be told.   It turned out to be different from the one I had assumed I wanted to read eight years earlier.  Indeed, if I had read that one, it would have been more damaging than helpful.  It would have kept me tethered to the past as if it were still the present.  The essential component to any good narrative is surprising yourself with a discovered truth.  Without “aha!” moments you are venting, not healing.  My “aha” moments came when I stopped making myself the center of all my thoughts.  The way I first incorporated my mother into my story was to show her as being less than compassionate when my sister or I were sick and of relating her experience with depression when I was in my early teens by saying only how it affected me.  But the whole story included the fact that my grandmother had had a stroke when my mother was six; she lived but was so disabled my mother was essentially unmothered.  How could I not feel for that little girl and recognize how much my mother must have had to learn in order to raise her own children?  And toward my husband I had to show my understanding of the role I played in keeping him out of the children’s lives.  When it came to caring for Nadia my burden was so much greater than his and my instinct was to play the martyr rather than discovering an opportunity for transformation and opening the door wider for my husband.

So I wrote Motherhood Exaggerated as a route to personal transformation and as a mirror for others.  But there is third reason.  For the past several years, I have volunteered at the Children’s Museum of Manhattan helping homeless mothers write about personal experience.  Some of their most profound work lets the reader into their lives during moments when no one can see them.  It could be when a special interaction with a child confirms for them that they are good mothers or when they have conquered a negative impulse or experienced a time of despair.  It could paint a portrait of what happens in the middle of the night when darkness and the soul have a private conversation.

There is a scene early in Motherhood Exaggerated depicting a night of pain for Nadia, which I am unable to soothe with my meager stockpile of tricks and drugs.  Near dawn, I’m angry.  “I want to wake everyone in the house.  ‘See, see!’ I want to holler.  ‘This is what I have to deal with while all of you are safe in your beds!’”  So I wrote Motherhood Exaggerated not just to be a mirror in which you can find yourself—as a mother or father, a daughter or son, a medical professional or a caregiver.  It is also an open door; a way for you to see me and others like me.

Nadia is now twelve years out of treatment.  She is studying dance and in those moments when I see her on stage, I can see my true daughter, no longer through the scrim of illness.  If I wrote Motherhood Exaggerated today, what would I say differently?  I would probably write more about the long-term impact of survival.  While I didn’t complete the book until eight years after Nadia finished treatment, it still only covers the year of her illness and three years into her good health.  The years since have continued to be filled, if not with cancer, then with the cancer experience.  Nadia’s transition to college, in particular, reawakened every dormant emotional memory for me, like a bee hive coming alive in the morning after a cold night.  At night, after the third or fourth sobbing call from Nadia, I would lie in bed repeating to myself, “It’s not cancer. It’s not cancer.”

I would also like to have more conversations with Nadia about her memories of that time and incorporate them into the story to broaden its view.  When she read the book, which she did after asking for the first printed copy while insisting she would never read it, all Nadia had to say was, “I think we remember some things differently.”  It wasn’t the right time to ask her what those things were.  Only this year do I see in Nadia the “I do” girl she was pre-cancer.  But I do want to know what she would say if I asked.

And I think I can still find deeper levels of compassion.  To do that requires moving beyond motherhood exaggerated to Judith Hannan non-exaggerated.  As I grow beyond the daily tasks of mothering, what does it mean to be a parent to adult children and spouse to someone with whom childrearing is no longer a major ingredient in the glue keeping us together?  If I learned anything while caring for Nadia and through the experience of writing, it is that I had kept too tight a control on my family.  I didn’t laugh enough.  I was stubborn and didn’t always admit the viewpoints of others.  Who am I now is the question I, and we all, need to ask ourselves as routinely as we brush our teeth, and how do I use this continually transforming person I am to live my life fully, without defense, and in the most giving way possible.

Motherhood Exaggerated can be ordered through your independent bookstore or by going to www.motherhoodexaggerated.com, amazon.com, or barnesandnoble.com.