Written October 04, 2018 in reflection of my son, Andrew's, battle with childhood cancer.
As a parent I often felt frightened and alone when caring for Andrew. When he would ask me questions like, “Mommy, am I going to die? Or Mommy, will I ever be normal again?” I just wanted to die myself. I was afraid to think, I was afraid to let myself even begin to entertain thoughts of death. I was so outraged at how the situation was out of my control that when he would ask me questions that were so emotionally charged it seemed like it took me days to recover.
I remember the day Andrew’s hair really began falling out. It was only a short time after he had received some pretty heavy chemotherapy agents. Up to that point he had lost only small amounts of hair. His hair was thick, so I just convinced myself that it was only going to be a mild thinning, nothing significant. On this particular day he was lying in my bed with his favorite stuffed animal, (Curious George) tucked under his arm. The other children were outside playing and the windows were wide open. The radio was on and for the moment he seemed to be resting peacefully. His favorite song “Life’s a Dance” was playing and I could hear him humming the words…
“Life’s a dance, you learn as you go. Sometimes you lead, and sometimes you follow. Don’t worry about what you don’t know, life’s a dance you learn as you go.”
I went in to lie down beside him. I just wanted to feel him and drink in his presence to calm his and my fears. It was important to me that he knew I was there for him, always. In an effort to do this, I scooped him up close to me and brushed his hair back to kiss his forehead, and when I did…I brushed a huge hunk of hair off of his head and on to the pillow.
I forced myself to rub his head again to see if his hair really was falling out from just my touch, and as I did, it continued to fall onto the pillow. I was shaking so hard. My heart at that moment was so heavy as it pounded deep within my chest. I was filled with a fear so intense I thought I would die.
I had read him children’s books that the social worker had suggested I read him to prepare us all for his hair loss. I had read several articles myself in an attempt to prepare me for anything we might experience, but when it happened I realized that there was no way you could ever really prepare for this.
I will never forget the feeling of panic that went through me. I didn’t know whether to call the doctor, cry, leave the room, or vomit at what I had just experienced. I certainly didn’t know how to tell him and I was even more frightened to show him. He didn’t notice at first. He was content and enjoying having his head stroked. He wasn’t watching it mat up and fall into clumps onto his pillow. The disbelief paralyzed me in a way that I still can’t put into words. When I close my eyes I can still feel that silky hair slip through my finger and fall onto his pillow.
Later that afternoon, after giving him a bath we talked about his baldness. I cried, he cried, and then somehow we came to an understanding about his new look. We agreed that being bald couldn’t be as bad as it seemed, after all Michael Jordan was bald and everyone still liked him. Thank you Mr. Jordan…your shiny head was a trademark of royalty, your “Royal Airness” celebrity at that moment became a reason for us to view Andrew in a sort of majestic way. To me, and to those who love him, Andrew’s baldness became a symbol of his importance and significance to life and humanity. A rite of passage in the community of illness and a symbol of strength and courage.
After getting him settled back into bed, I removed the pillowcase and went down to the basement to wash it. I fell completely apart. I remember sitting on the floor, up against the washing machine and sobbing uncontrollably. I was incredibly scared and overwhelmed… not quite sure that I was going to be able to hold on much longer. My nerves were shot and my heart was broken, I could feel myself getting closer to the edge. I struggled with this part of his illness. This all made it real to me. Before I could look at him when his face wasn’t swollen and pretend that he was fine, that we were just going through a tough time and that in the end we would triumph over illness, win the battle so to speak.
At the time I fought internally with myself over whether to wash the pillowcase or leave it as proof of what I had just experienced. I wanted someone to validate my feelings and assure me that I was indeed strapped into my seat for my very own flight through HELL. I wondered if other mothers reacted as I did, if they fell apart when their child’s hair fell out.
I didn’t end up washing the pillowcase. Instead I folded it, placed it in a small box, and later that evening buried it in the back yard. I couldn’t bring myself to wash it, it didn’t seem right to wash away the hair as if it didn’t happen or didn’t hurt. To me it was like losing someone I loved. It hurt every bit as much because every time I looked at his bald little head I knew just how much I had to lose, not just his hair. But his life!
I mourned that hair as if it was a life. When he lost it, it forced me to admit that his cancer was truly real, not some temporary situation that would go away when I woke up. He was nervous about losing his hair and so was I, but I have to say he dealt with it better than I did. Hair loss is a big part of chemotherapy, it’s traumatic and not easy to accept or prepare for. For me it was the part of illness that drove home the magnitude of what we were experiencing. It forced me to confront the reality that his life was not in my control and that no matter how much I did or how hard I prayed, I was powerless to change what was going to happen.