Skip to main content

Butterfly Blog

The "Something" Good

There is, obviously, nothing good in the world about childhood cancer. It's an evil abomination that should never be visited upon any child or family. The complete randomness of it is maddening; there is no rhyme or reason to whose child gets cancer. It's like autism: it cuts through socio-economic status, race, gender, and religion. No child nor family is immune. I ate all organic food while I was pregnant and breastfeeding. I breastfed for two years, and I made all my own organic baby food for the first year. As my son began to eat a greater variety of food, I still made everything for him organic. His first birthday cake was a double chocolate cake with chocolate cream cheese frosting (yummmmmm). It was all organic, from the flour to the sugar to the eggs to the chocolate. And yet, at 27 months, he was diagnosed with cancer. It's just what happened. The random unfairness of it is breathtaking.

When he was diagnosed, I felt (and understandably so) that life was over. I remember going to Hannaford (a New England/upstate NY grocery store) the day we got out of the hospital, and I remember being stunned that people were going about their lives. Quite honestly, I remember hating everyone in that store that day. I hated the family walking around eating donuts. Nothing organic about those, and, yet, the three kids eating the deep fried dough smothered in shiny pink frosting and dusted with pure sugar and food coloring sprinkles certainly seemed healthy enough. I hated the man in front of me in the checkout line who was talking on his phone about fishing. My son had cancer, and this jerk was prattling on about fishing. I hated the checkout clerk who cheerily wished me a good day. I walked out of the store, got in my car, and sobbed. Life as I knew it was over, and everyone else's life was going on. Nothing, I felt, would ever be good again. Anguish and pain would be emotions we felt all day, every day, for the rest of our lives.

I was wrong. As days became weeks, and weeks became months, I, my husband, and my son gradually adjusted. We more than adjusted. As I said earlier, there is nothing good about childhood cancer. What I have found, though, is that something good can come out of childhood cancer. First and foremost, I have become a much better mother. Patience has never been my strong suit; patience is a virtue I absolutely have never possessed. The horrible, hideous, painful, sickening treatments my son has had to endure, though, forced me to approach him and my parenting differently. From somewhere inside me, I have found a reservoir of patience and understanding for my son that, frankly, I did not have before. I see and hear other mothers in Target and the grocery store snapping at their children with that frenzied, frenetic, impatient tone of voice, and I know that was my tone more often than I care to admit before he was diagnosed. It's easy to slip into a constant voice of impatience with young children--they can be absolutely infuriating and maddening. I have learned, though, to take a deep breath and be patient. Because of cancer, I have a kinder and more loving relationship with my son than I think I would have had had he not been diagnosed. I'm not proud of that, but it is the truth.

The amazing thing, too, about childhood cancer, is how it bonds you to women you have never met or whom you have met once in your life. I joined an online support group for mothers of children with cancer shortly after he was diagnosed, and, while I have never met the majority of the women on that group, I know them as much as I know some of my oldest friends. I know their fears, their dreams, their daily struggles with their children and spouses. I think of their children almost as much as I think of my own, and when something happens to one of their children, our collective hearts break. These women form a safety net for each other, and when someone's spouse lets them fall, or when a friend or family member is insensitive or cruel, we all catch and support that mother. We give each other medical advice and share information we learned from our oncologists. We are each other's and each other's children's biggest cheerleaders. Some of the natural supplements my son takes to combat some of chemo's side effects I learned of from the women in that group. Collectively, we add up to millions of hours of research, hospital experience, and worry-- and we share it all.

I have found that I am more able to let the small stuff go since my son was diagnosed. I used to fret, worry, and ruminate over things that, really, did not matter and were not a big deal. I was far more easily offended by real or imagined slights--I was touchy. Now, though? Stuff rolls off my back so much more easily. There is not room in my mind or heart for being angry over something that doesn't matter, or for holding grudges. The patience I have for my son has also been transferred, to a certain extent, to other people, too. I'm able to forgive and forget and put myself in other people's shoes. People are people, people live their lives, and we are living our lives. That's not to say I don't get angry or irritated--I still do. I can let it go, though, and move on.

Most importantly, childhood cancer has given me a depth of appreciation for our lives together as a family that I don't know I would have had before. It has given me permission to slow life down, and it has given me permission to let go of the unimportant things. We used to be adamantly against co-sleeping, and I was always a big fan of sleep training. Now, though, he ends up in our bed every night, and I wouldn't have it any other way. I don't know what the future holds, but I do know that I will not ever be in the position of thinking that my child wanted the comfort of me and my husband and we denied it to him for the sake of "sleep training". Not knowing what the future holds forces you to revel and bask in the moments you have together now.

We give our son his 6MP at night, when he's sleeping. It's compounded, so all I have to do is get him to open his mouth a tiny bit, and I squirt it right in. He barely wakes up, and it's easy. Each night, though, I linger. I take those moments to watch him sleep. I study his eyelashes. I smile at his little mouth, pursed up in dream. I stroke his cheek and memorize how soft and cool his skin is. When he's awake, I give myself permission to greedily drink him in and feel overwhelmed with pride and joy that he's mine. His little, pudgy body that has endured so much is perfect. He has three little dimples on his hips where his bone marrow biopsies were, and his port is blueish under his clavicle. His cheeks are probably chubbier than they would ordinarily be because of all the steroids, and they shake when he sprints down the hallway. I try to soak up and imprint in my mind the moments we make as a family because I don't know if we have a lifetime of memories to make, or just a few more weeks, months, or years. Nobody really knows how much time we're given with our children, but confronting that concept on a daily basis changes how you view time.

With all that being said, I would still do anything, ANYTHING, to take my son's cancer away. I can't, though, so I try to look at not just how our lives have changed for the worse, but how I have changed for the better. Obviously, I have always loved my son more than anything, and I always enjoyed him. When life is "normal", though, I think we all have a tendency to rush through the ordinary days and get caught up in the unimportant minutia of life. When your life has become suddenly abnormal though, you realize just how extraordinary the ordinary moments that make up life really are.

Powered by Firespring