Nicholas sleeps like a rock. It’s been 3 days since he has been fully awake and in terror that he would be sent to ICU.
Saturday, September 25/1999 In this terribly skinny, scarred and beaten old man body on the hospital bed is my boy – my lovable, silly, youngest child. This busy, boisterous child who banged, and slammed and his laugh was enchanting. The kid who ran everywhere: through the kitchen, hopping from one foot to the other, into the bathroom for his morning first pee; out the door to roll in the grass with the dogs, and to the shed to get his bicycle to ride with his brother.
My thoughts touch on his death then recoil as if bitten, my bowels cramp. I just can’t fathom what my life would look like without him. How does one grasp that their child will die?
“Nick. Nick, wake up. Please. I miss you. What’s wrong?” I say into his ear.
“Oh Mom.” He doesn’t open his eyes and his words are slurred. “My head hurts.”
What’s going on? The doctors tell us this drowsy state is a combination of the child doesn’t eat, all the nasty medications, and the disease. They hold their charts and stand still inside the room. This irritates me. Go! Do something, something more for Nick.
Years later I’m looking back and I know they just wanted us to grasp there was nothing more they could do. They did their best. But I wish we’d had a medical/psychological someone who spent time with us. People need honest, open discussion when it’s OK and expected that there will be anger, and denial and grief so thick it will be hard to breathe. The human mind and heart need time to absorb the idea someone they love, especially a child, will die.
Each morning I roll out of bed and it’s like my cup of depleted hope from the night before has been refilled while I slept. I think that yesterday was a huge mistake and today there is a chance that everyone was wrong and he will live. And everyone who says he will die is full of shit.
Sunday, September 26
Heather and Charlotte got onto a plane this morning. Heather goes home to 8 year old Melissa. Wilm’s tumor took one of Melissa’s kidneys. She needed to finish the chemotherapy protocol because history shows children have a better chance of not relapsing. But the therapy is terribly aggressive and it perforated her bowel, spilling toxic contents into her abdominal cavity. That was enough to have killed her. The child was too weak to finish the protocol. Heather was told to take her daughter home. She holds her breath, and her little girl and embraces each day.
Charlotte goes home to 4 healthy children. There was a cancer-free time when I stupidly would have thought that would make a difference in the grieving process of losing one of 5 children. Her son Nicholas was gorgeous, blonde, blue eyed and not quite 3 years old when he died four months ago in May. These girls, their strong hugs and knowing smiles despite their grief, gave my family a boost of strength, faith and hope.