The first time we arrived to the outpatient oncology clinic, I remember a waifish, gaunt child passed me in the hall. A few long strands of hair remained on her otherwise shiny, baldhead. This child was clearly very sick, critically sick, and the waiting room was filled with children that looked just like her. I could not process that we belonged in this miserable place. My child did not look like these children . . . yet. Hair became symbolic to me then, and within a month I shaved Nico’s head. We would beat chemotherapy to the punch, and take all his hair before this poison could. Nico fought me, cried and my unskilled hands made his hair look even worse. In hindsight, it was selfish. I wanted to control something in my new impotent role as “cancer mom.” But I traumatized Nico and this became obvious later.
In the beginning, well-meaning people assured me that, “hair is less important to boys” and “young children do not know any better.” This is not true. A few months after my hatchet job, Nico finally lost his peach fuzz and turned into a cue ball. It happened in a day or two, and the change was dramatic. Chemo bald looks very different from shaved bald. Nico assessed himself in the mirror, and declared he was now Caillou. Caillou is a favorite cartoon character of Nico’s and he is drawn without hair. Nico took this transformation to a new level, referring to and introducing himself as Caillou for many weeks. This seemed to have the effect Nico desired. Children in clinic generally seemed impressed, explaining they were big fans of his. Nico responded like the big man on campus, gracing the other children with his celebrity status, and appeared to feel pretty special.
By the end of front line treatment, however, still less than 3-years old, Nico came to me crying and explained calmly that he did not want to be Caillou anymore. He said that he wanted to be Nico again. Hair grows back, and when Nico’s did, it became clear that hair was now symbolic for him too.
Nico did not want anyone to touch his hair. It is normal for 3-year olds to resist washing and combing. This went further. The longer Nico’s hair grew, the more neurotic he became about it. He refused to swim, participate in “water days” at school, or even wear a bathing suit out of fear of getting his hair wet. After baths, he would cry into a mirror while waiting for it to dry. Jeff and I thought we would never want to cut his hair after it finally grew back, but the daily battles and tears over his hair changed our minds.
We had a family reunion in September, and I knew there would be a lot of swimming. I realized my role in this neurosis, and spent an insane amount of time trying to desensitize him. We stood outside of a barbershop and watched people get haircuts. I allowed (even encouraged) Nico to trim his stuffed animals. I let him trim my own hair. He eventually let me, and only me, cut the long strands off the back. This was only so he could swim at the reunion and still resulted in a lot of tears. Once he was finally willing to get into a pool, I decided I was done talking or thinking about hair. So done.
Then a couple of weeks ago, we were walking out of a restaurant when Nico noticed a hair salon next door. Nico peered in, and announced that he was ready to cut his hair. We nervously entered the salon, Jeff and I hoping that someone, anyone was available to cut his hair. Nico was shy at first, but luckily the available stylist, Chris, knew exactly how to engage him. Chris allowed Nico to use his Transformers towel from swim class rather than a cape, which looked too much like a surgical gown. Her eyes told Jeff and me to step away, and we did. Chris snipped and clipped, and appeared extremely interested in Nico’s detailed and very long explanation of volcanoes. Nico had no interest in Jeff or me being there for this moment, but just chattered endlessly with Chris the entire time. It seems silly to characterize Jeff and me as proud over a haircut, but truthfully we were beaming and giddy. Happily, hair is just hair again. The haircut meant, "Mom, I will move forward when I am ready. I will move forward in spite of cancer, chemo and in spite of the mistakes you make along the way. I am OK." And so, we all move forward.
P.S. There are more pictures of the haircut directly following this post.