Rayonnement

Resting on the shelf in my closet was a fabric, hard-cover journal with a yellow and orange ribbon bookmark and a dragonfly charm attached to it. The cover has the faint smell of the incense he burned daily to ward off the bad spirits. The white pages with their orange lines give off the faint smell of the perfume that he wore. Reading through the pages I recalled things that had happened back then. I recalled things that had transformed from memories to forgotten memories, to words written in faded ink from Mystix pens onto the thin pages of the journal that was custom made.

His words stung my heart and my tears stung my eyes. But the mystery of the journal’s origins perplexed me. Where did it come from? I had cleaned off that shelf in the closet many times since his death, and the journal was not there before. I thumbed through the pages, through the cruel winter, the harsh summer, and to the fall when he health really started to fail. I read about the pain, the misery, the hardness. I read about the friendships he had made on his one gateway to the outside: The internet. That fall, we had taken him out of school, we told him he could do whatever he wanted and whenever he wanted. But what he wanted most was to graduate and go on to college. My husband and I had talked with his principal and gotten him back in class. He made such good grades they let him graduate that year. He was accepted into the college of his dreams.

My husband and I became the worst parents in existence over the next three months. We let him think that he was going to live. That he was going to get well and grow up and graduate from college and get married and have a family. We let him think that the future was bright and everything was going to be okay. Mostly, we let him believe that he had gotten well, and that was the reason he no longer needed chemotherapy or surgeries or radiation. We didn’t have the heart to tell him that the doctors had given up and told us that at this point it would be considered “child abuse” to pursue treatments. I remember smiling and telling him that he was going to be okay and go back to school with his friends and that everything was going to turn out fine.

Hope was better than all of the medications we could give him for the pain; the pain subsided. He was able to walk further. He did great in school. I have never forgiven myself for letting that continue. I still haven’t. His journal entries were happy and light at this time in his life. The world was a beautiful place.

Then, that Christmas, we hadn’t expected him to be alive. We hadn’t gotten him anything with the rest of the family. The night before Christmas, I upped his pain medication a little, hoping that he would sleep through the gift-giving madness of the next morning. It worked, until my daughter looked up and saw him standing there in the living room doorway, a look of shock and horror on his face. She called out his name and ran to him, carrying a huge, over-stuffed stocking of candy and treats that she and I had filled the night before.

He asked one question that broke my heart forever:
“Why are you having Christmas without me?”

His grandfather gave a reply that still floors me to this day:
“Hell, you’ve been terminal since September. We figured you’d be dead by now.”

Reading the words in the journal made me cry once again. I remembered the look he gave me. It wasn’t anger, it wasn’t shock, it wasn’t horror. It was simply sadness. He didn’t even cry that morning. I wished he would have. It would have made me feel as if I had truly done something wrong. He just turned and left his family to open their presents, and he never really came back.

On Boxing Day, my husband and I offered to take him to any store in the world and buy him whatever he wanted for Christmas. He said he didn’t want to be forgotten – no, his words were, “Don’t let me be forgotten.” The next morning, I woke to him sleeping across the foot of my bed. On the 28th, he was screaming in pain from the cancer. That night, I tried to drown out the screams. I gave him every ounce of narcotics I could find, and it wasn’t enough. He was suffering. I made the call. I called for the emergency crews to come.

The journal was kept up until he did die: He died of gall stones, the day before his 20th birthday. Of all the things that had gone wrong with him, that was the one thing that killed him. It was 100% preventable, and it was 100% our fault that it wasn’t looked into. With all the pain and suffering he went through, his doctor assumed it was more cancer in another place, and gave him stronger meds.

The last page of the journal read that I was not a failure, but he knew forgiveness was important to me, so he forgave me. He wrote that he was not suffering, but that he wasn’t thinking clearly, either. The writing is scrawled and slanted off the lines, the ink is smeared and faded, the pages are torn and stained with a red substance, but the message is still clear.

I am left wondering what to do with the journal. Should I put it back? Should I have it published? What should I do?

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