Random Thoughts

I was on my way home tonight and found myself listening to a story on NPR* about survivors of childhood cancer. In a blink, I was back in those terrifying days when J had had her prenatal diagnosis, and again after she had her emergency surgery at 5 weeks of age. It’s amazing how that anguish is still so near the surface for me. I don’t know that I’ll ever be free of it. J didn’t have cancer. And she’s grown to be a delightful, bright, and happy little girl. So it may seem odd that I was so struck by the stories I heard today.

I was absolutely struck by the conversations the host was having with the parents of children who had survived childhood cancer only to go on and develop life-threatening illnesses or developmental problems. The doctor being interviewed talked about the importance of after-care and follow up throughout the lifespan of the survivor. But in the next breath, she talked about how many children cannot face going back to the hospital for this much-needed care. They can’t face the IV poles and the needles and the sterile hallways and the environment in which they battled their disease. They suffer physical reactions to the sights and smells of the hospitals, which often leads them to abandon the very important regimen of lifelong care and awareness. Although I have never faced cancer myself, or with my children, this story hit very close to home for me. Before going through our experiences with J, I would have listened to that NPR story and thought that anyone who would disregard recommended treatment was just irrational and weak. However, having stood at the bedside of my very sick child for a week in the hospital, I understand. I understand the chill that must permeate those survivors and their families. I understand the desire to turn one’s back on a painful experience and shut out everything that serves as a reminder of difficult times. I know what it’s like to come to tears just driving past the hospital where bad news was delivered and a mother’s worst nightmare came to life.

I don’t take my children for granted, and neither do any of my friends with children. I don’t neglect their needs for the sake of my own comfort. If one of them should ever have to endure something as horrendous as cancer treatment, I would stay with them always, no matter the fear and pain it may cause me. It’s just what parents do, in my opinion. Up to this point, we have been blessed, having been given two healthy, developmentally normal children. I think it’s that fact that is sometimes taken for granted. I don’t go about my daily life thinking about the normalcy of it. I do spend a fair amount of time worrying about what may come tomorrow, or five years from now. Throughout two pregnancies, I worried and prayed for healthy, typical kids. As I watched both grow through toddlerhood, I was vigilantly watching the developmental milestones and charts. I worried that somewhere along the line, something would go wrong and my kids would be “different” and not as perfect as everyone else’s kids. I’m not exactly sure whose kids I was referring to. Furthermore, now that my kids are here and growing, I realize they’re far from “perfect,” but they are who they are, which to me is perfection itself. And the worrying continues anyway. Worries about accidents and illnesses and fears...and all sorts of things that have nothing to do with anything but the will of chance and circumstance.

It occurs to me that, as a society, we value perfection in our children. I certainly did. I was so worried before J was born that she wouldn’t be “perfect,” and that she would suffer with some lifelong disability that would somehow diminish her worth in this world. Without getting political about it, ending the pregnancy wasn’t an option for us, and as parents we believed that we were to be gifted a child, and perhaps a child that came with the tremendous responsibility of a life-altering disability. What I have learned and lived since then is that there is no “perfect” child. To me, my kids are perfect. To my mom-friends, their kids are perfect. To the parents of the children I serve, many of whom have genetic, congenital, or syndromic disabilities, their kids are perfect. Something I couldn’t understand before I was a mother is just how overwhelmingly powerful the maternal instinct is. That instinct to protect, and love, and encourage, and guide, and shelter from heartbreak and pain.

I know, and work with, some amazing parents of children who have different abilities. Who have to use alternative means to get around or communicate. Who “look different” and think differently, and perceive differently. These children present tremendous challenges, and I can only begin to understand a fraction of what their lives and their upbringing entails. When I watch those parents who are skilled in managing their disabled child, I feel quite certain that I could never do it myself. But who knows what tomorrow holds? That’s the pure uncertainty of choosing to love and desiring to raise children. It’s not about having “perfect” kids. It’s about constantly striving for “perfection” as a parent, realizing that there simply is no such thing, and going about life being thankful for the gifts we’ve been given.



*A sidenote about my NPR addiction. Last week I was in meetings with the special education director in one of the districts I serve. We were running a little late getting from one meeting to the next, so he offered me a ride in his truck, and I took him up on it. It was raining, and even though there was only about 100 yards between the buildings, I was grateful for the offer. When he started the car, some hard rock station out of Columbus started blaring at me. He laughed and said he was sure that “wasn’t my style.” He asked what I normally listen to. I told him NPR. His exact response? “NPR? That sounds boring! Isn’t that, like, news and stuff?”