During a family gathering, my two-year-old nephew, Stanley, climbed up onto a cabinet and pushed on the window screen to get the attention of his cousins outside. They looked up just in time to see him flying through the window, face-first onto the concrete below. It was quite a scene with Stanley screaming, parents running and paramedics on the phone. He walked away with a few scrapes and a nasty bump on his head so he was very lucky. All of the adults were shaken by the shock of watching him fall and the thought of what could have happened. The rest of the day he got whatever he wanted, and was passed from aunt to aunt for cuddles and cookies. We did not want him out of our sight and I don’t believe his feet touched the ground until bedtime.
I thought a lot that day about how hard it is to see a child hurt. There are few things that are more painful to me than watching a child suffer. There is usually little you can do to take the pain away when you would give anything to make it better, a feeling my parents know all too well. As a teenager, I was diagnosed with Crohn’s Disease. No one knew what that was at the time, so I had a script down about how it was a disease in my intestines that kept my body from digesting nutrients from the food I ate and caused severe stomach cramps. That was the simple version and people typically said “Oh,” and changed the subject. Digestive diseases are an awkward topic. I usually left out the part about how a virus was tearing up my insides and malnutrition caused all the problems that weren’t covered by the side effects of medication. If I wasn’t doubled over in pain, I probably had my head in a toilet. My experience with a very serious disease taught me that there is so much that we can do to help a child who is suffering from a health problem they can’t control and did nothing to deserve.
Thanks to my illness, I know more than I need to about what it is like for a child to endure pain and misery. More importantly, I know what is like for a child to observe what their pain and misery is doing to the family around them. Intellectually you know that you didn’t cause this and you can’t stop it, but you can’t ignore that your very existence is causing other people pain. One of my strongest memories of that time is my mother putting bowls of strained oatmeal next to my bed and begging me to eat. She put all the energy she had into whatever she could find to ease my pain, even if it meant hours of essential oil massages or getting up in the middle of the night to stroke my hair. Besides my parents, few people really knew how to help me. People very kindly came to the hospital during my frequent visits and asked how I was doing but I felt a little bit like an exhibit at the zoo. All anyone could talk about was my illness and I wanted to talk about New Kids On The Block and pretend I was a normal teenager. I felt like my future was gone and I would never be independent and able to take care of myself. Although I was 89 pounds at one point during my senior year in high school, my parents helped me with my homework and I managed to graduate. I barely remember that year because I could only focus on the pain, the guilt from knowing my illness was affecting my brother’s life, and the financial and emotional stress that I was causing my family.
Eventually I had no choice but to go through major surgery. The disease was threatening to perforate my intestinal lining, which would have killed me, so my large intestine was removed. It was a difficult period of adjustment but I learned when and what to eat, and my body adapted. It was the turning point that brought the end of my health problems and what felt like the beginning of my life. My parents do not have to sit next to my hospital bed for weeks on end anymore. They don’t have to watch me writhing on the floor in pain. They don’t worry about how I am going to support myself. I am healthy, independent and happy; three characteristics I never thought I would be able to claim. Now they get to stress over my habit of throwing myself out of perfectly good airplanes, traipsing around Europe alone with little regard for my own safety, and my elaborate plan to elope with Johnny Depp. I can’t make it too easy on them. That’s not what being a parent is about. (Out of curiosity, I called my parents, and asked them what I do that freaks them out. My dad said, “How many pieces of paper do you have?”)
In three months I am going to run a half marathon to benefit the Crohn’s and Colitis Foundation of America. The charity organization has a team of patients and volunteers that train and fundraise together. My first training session was very emotional for me. There was a time that I was so weak and frail that I didn’t think I was going to live, and in so much pain that I wasn’t sure that I wanted to. And now I am training to run 13.1 miles to support summer camps and programs for children suffering in the same way. I started tearing up as soon as I hit the track. I am not a “runner” and I am going to need every minute of the three months to prepare, but I am excited about proving to myself that I am strong and healthy, and capable of achieving such an overwhelming goal for a cause that means so much to me.
Children suffering from illness or disability carry a large burden. They have done nothing to deserve the hand they have been dealt, and aren’t always mature enough to see beyond what they are feeling right now. When you feel so bad, it is hard to look at the long life ahead of you and believe that you will be happy. Older kids can be acutely aware of the stress they are putting on their families and the guilt just adds to the pain. Every single one of us can do something to help; something to make a sick child’s day a little better; something to stimulate hope. You don’t have to attempt to run 13 miles down the Las Vegas strip like a crazy person as I have signed up for. I don’t think I even have to offer suggestions because the possibilities are endless. We all know a child whose circumstances are difficult and it does not take a lot of time or money to help someone forget, even for a few moments, that they are not like everyone else.
In hospital, I lived for the moments when a friend would interrupt my long and boring day to paint my nails hideous shades of blue and silver and tell me about what happened to them at school. All you have to do is have a normal conversation about how awful it is that Edward and Bella broke up, what Justin Bieber did this week, or encourage the hope of going to college one day. That is all it takes to be a hero in the eyes of a child that would give anything to be a normal kid for just a little while.