Monday, June 3, 2013

Community Faces: Julie Wagoner

One of the exciting things about the Community Faces Project is the number of people without CF who have written posts. Parents, siblings, spouses/partners, family members, and friends of people with CF (crazy fools) bring a totally unique perspective to the table -- and it's a viewpoint that I, for one, never tire of hearing (or of learning from).

This is one of those stories. Written by an amazing CF mom, it captures that moment of recognition so many of us remember when we first understood the reality of cystic fibrosis. Perhaps not surprisingly, I relate to this story on an extremely personal level. I remember wandering into my grandmother's living room as a child, plonking myself down on the floor next to an end table that doubled as a bookshelf, and skimming the titles until my eye landed on the words "cystic fibrosis." The book was Frank Deford's memoir of his daughter's short but beautiful life, Alex: the Life of a Child. I snuck it back to my room and spent the next week or so turning its pages and shedding tears. Years later I would win the award from the National CFF that bears her name (that's Mr. Deford and myself on the right, holding the amazing painting I received for the award). She remains to this day one of the many CF spirit guides I carry with me on this journey.

CF was already a huge part of my life when I read about Alex's heartbreaking and inspiring life. But for many people who read the best-seller or watched the movie made of her life, that part of the picture would only unfold later. And this is Julie's wonderful story.

Community Faces: Sounds from the Underground

Name: Julie Wagoner
Relationship to CF: Mom to an almost 15 year-old CF superhero named Gage. DF508/N1303K, diagnosed at 23 months, upper right lobectomy at 7, two port placements, lots of bronchs and IVs, kidney stones, one sinus surgery, and a partridge in a pear tree.
CF Perspective: CF has been a struggle, but not one without rewards. The current reward is facing the dreaded teen years, which are absolutely kicking my butt! But, quite honestly, I wouldn't have it any other way.  

The year was 1986, the year I turned 14. I was a scrawny girl, burdened with prepubescent gangly limbs, stringy long hair, sporting sunburn and freckles, skinned knees and mosquito-bitten ankles scratched raw. It was summer. We were visiting family at the beach and I sat huddled against a door frame, my ear to the wall, peeking out from behind my cousin's bedroom door in order to see the television in the family room. My tears were hidden there, my throat sore from holding back sobs, embarrassed at the thought of being caught and teased, but unable to look away from the story unfolding on the grainy screen.
It was about a little girl, younger than myself, and she was dying. I'd seen plenty of movies before, about disease, about war, about monsters. I confess to being tender-hearted, though I hid it from most. But something about this story hurt in a way that was different, frightening. I grieved. I was grieving for a girl I had never, nor would ever, meet.
Nothing could be done for her? There was nothing? Surely that couldn't be right. Medicine could fix so much. How was it that this tiny young girl had no life ahead of her? I couldn't understand.
I watched to the inevitable end and stayed in my cousin's room that night, unsettled, sad, and confused. And while my vacation went on, as did my summer, she lingered in my thoughts. I found the book that the movie was based on at the library once we'd returned home, but I could not bring myself to actually check it out. It was too harsh, too cruel. Instead, I returned each week to find it, still on the shelf where I'd hidden it, and sat alone in a darkened corner, quietly reading the entire story, written in her father's hand, once more hiding my tears. No other piece of writing ever quite affected me the way that book did.
Had I known? Looking back I wonder if something deep inside me knew, even then, that the disease that stole this child from her parents lurked inside of me, hidden, silent, waiting. If some base instinct in my body foretold of what I would pass on to my son so many years later. If some part of myself had grieved, even as a child, not only for her, but for myself.
The movie was 'Alex: The Life of a Child', based on the book, by Frank Deford. It was about a girl named Alex, who died in 1980 at the age of 8 from cystic fibrosis.
My son, Gage, was born in 1998 and diagnosed with the same disease in July of 2000, 14 years to the month since I sat in that bedroom and watched the story of Alex. And because of her and her story, our lives are improved. Saved.  
I will always carry a piece of her in my heart.
Awareness. Pass it on.

1 comment:

  1. This comment is for Julie - Gage's mom - reading your story was as if I could have been reading my own story - like you I also had seen the movie and then ended up reading the book. I remember the end of the movie when they say that the hearing is the last part to go when we pass and Alex's brother was in her bed with her - so sad. And like you, I passed on the gene to my 17 yr old daughter who has CF. I remember hearing the diagnosis and remembering very clearing the story of Alex, I was so scared for her future and what this would all mean to her and our family - I am so grateful that research has come quite a way but am still holding out hope for that CURE! All the best to you and your family - Stay Happy and Healthy!