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.