As
part of my participation in My
500 words, I am posting what I write each day.
One afternoon I was lying in
the grass with my daughter, Naomi. She was probably three years old, before she
got cancer. We lived in a first floor condominium unit and enjoyed being able
send the kids outside to play. Naomi might have been having a bad day or I
might have been feeling imaginative and philosophical, but we were looking up
at the clouds and I asked her to tell me what she thought they were like. I
told her I meant personality-wise. What were the lives of the clouds like? What
did they think about, feel and do?
I remember the question, just not her
answer. She and I probably both speculated, making things up. Maybe it had been
almost time to go in to dinner. But it was a peaceful little time.
Months later, Naomi was diagnosed with stage
4 Neuroblastoma. She handled it in her way, fighting when she could and being
boisterous and cheerful lots of other times. She got along well with the
hospital staff and usually cooperated. Her appetite disappeared, though. And
the decision was made to put a feeding tube in her nose to deliver nutritional
liquids.
Putting in the feeding tube was one of the
most traumatic things she’d had done to her. She fought and yelled and when it
was finally done, Naomi was uncharacteristically subdued. It was evening at
about her bedtime and she sat in her hospital bed stunned and quiet.
So I sat next to her in her bed. The IV pump
rattling next to her delivering fluids to her veins and the nasal-gastric pump
whirring its new song putting Pedialyte in her stomach. Instead of reading to her
that night, I told her a story. I reminded her about the clouds we’d talked about
that afternoon, back before her life changed, back when she had hair and there world
wasn’t full of scary diseases that made children die. That afternoon had been peaceful,
innocent, and I tried to pull those feelings back… for both of us.
Again, my memory is a little cloudy here. I don’t
remember the story I told, as much as I remember that it helped dispel the misery
we both felt. A sense of peace settled over us, along with a feeling of adventure
and fun. As much as I remember, the story was about a little girl living in a castle
with towers tall enough to reach into the clouds. This little girl would spend her
days in the upper levels of the castle towers where the clouds came in and played
with her.
I wish I had taken the time after Naomi went
to sleep that night to write some things down. I carry a notebook and pen with me
everywhere nowadays for things like that. But the general idea of the story stayed
with me. A few years later, I tried to write it. I started the story with a little
girl who lived in a castle that reached the clouds. But then in chapter two the
girl got sick. In the fantasy world I was inventing, the disease wasn’t called cancer,
but the symptoms were what Naomi had. I got about 4 short chapters in and stopped
writing. There are a few copies saved in my files of old writings and I cringe when
I read how I used to compose sentences.
We lost Naomi a few months before her 7th
birthday. A couple years later, I brought the story back. I’ll share more tomorrow.
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