Reservoirs of Hope

I posted optimism in haste. I understand, I am optimistic by nature. I am also superstitious, however, and that should have given me pause. Regardless, I was hasty and we have seen immeasurable sadness.

My son returned to a fetal position on the floor, unable to contort himself enough to not feel pain. He winced, he punched pillows, he cried. I did too. “It’s not fair!” He screamed. I told him he was right. It was not fair. Life often is not. He is only 12. I wish I could know the pain he is feeling. I wish I could experience it so I could commiserate with him. I fear the pain I feel as a mother might be worse. I hope it is because I am abler to weather it than he.

He rearranges himself constantly, twisting around within and atop the quilt, like a giant stress ball but regrettably ineffective. Another very sad week to enter into the calendar.

“Tomorrow will be a better day” I tell him, just like my mother used to tell me when my day ran afoul. Each night I go to sleep an empty pot left beneath a leaky ceiling, allowing hope to collect in time for morning. Each morning I wake with expectation, yet it is always the same, if not worse. The pain still there, the agony unbearable for a young boy, and too much for this mother to witness. At what point do my empty promises reveal me to be an optimistic liar to my child. I cannot keep telling him that “tomorrow will be a better day” when it just does not come to fruition. Perhaps he should be more like his father: an over-prepared realist. Ready for and expecting the worst and anything less will be tolerable and even welcome. Then again, I’m not sure I could live like that either.

“Just sit here and look out the window” my mother used to tell me when I had a nightmare. It was also what her mother used to tell her to remedy the same situation. Inevitably, I would stare out the window and become distracted enough with whatever I may have noticed to have lost track of my nightmare. I wish I could stare out the window long enough right now.

“Just sit here and look out the window” my mother tells my son. But he cannot sit upright long enough without pain to complete this task. He again curls himself into a ball and weeps.

I wonder if this little boy knows how much he is loved. How much the lives of those who love him are thrown off by this spell. That his mother goes to sleep waiting to refill a reservoir of hope by dawn. That his brothers might be a little bit nicer to him. That his grandmother does not sound like herself when she answers the phone. That his grandfather makes frequent unannounced visits just to see how he is doing, just to look at his face, just to kiss the top of his head and rub his back. He is so loved.

Yesterday was the type of day you just do not expect when you wake up, even with a full supply of hope. When you confront a disease, especially one that afflicts your child, and you must contemplate therapies, sometimes none of the choices are good. All medications are accompanied by unfathomable risks and you find yourself asking doctors “is it at least a treatable Lymphoma?” as if that is an acceptable outcome. Simultaneously, compromising your child’s current health is not an option. Pile on the relentless pain and decisions are suddenly made amidst a pressure cooker of love and concern and the need for a young child to simply find some rest.

I refused to allow the nurse to provide a detailed consent, particularly in front of my son. I do not want to know the risks they are required to tell me by law. I do not want to know about minuscule possibilities of terrible things that may await us. I do not want to know about something that might have happened to a lab rat that received 1,000,000 times the allowable dose. I want to see my son well. I want to see his smile again. I want to see him be a 12 year old boy.

Several hours later, following his first IV infusion therapy, I did just that. Now he is at school. He is sleepy, he is concerned, but he is smiling. Today is a better day.

My pot is full.