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I have heard parents say that their cancer kids have grown wise beyond their yearsjust look into their eyes and you will see. Other parents will nod their head in agreement knowing it to be true. We, as parents, are often awed by our brave children as they teach us about endurance, courage, hope, loveabout life. Yet it is our responsibility to teach them. In these lessons, sometimes I wonder who is teaching whom. Such was the case when I decided to teach my daughter about the five senses. One day we just happened to get on the subject of senses. My pre-schooler was interested. As a teacher, I wanted to take a hold of this "teachable moment." So I said, "Tori, Did you know that there are five senses that the body has which help us to experience the world?" I could see she was up for the lesson. I continued, "Do you know any of the senses?" "I can see," she said. We talked about the marvelous gift of sight. We remembered seeing Mickey Mouse and a double rainbow. We remembered Ronald McDonald who visited Children's and let her make the magic handkerchief disappear. We talked about the videotape we made so her friends at school could see what it was like to be in the hospital. "Do you remember a time when you couldn't see?" I asked. I knew she could be cause she often talked about the weeks after surgery when she could not see. My little girl was one of the unusual few that developed cortical blindnessa rare problem with some brain tumor removals where the eyes work but the brain has completely stopped interpreting images. For almost two months she was functionally blind. As she nodded I asked, "What did we do then?" The answers flowed. We listened to music. We played books on tape. We played the music box. "We used our ears for hearing!" I agreed. "What next?" I asked while pointing to my nose. "I can smell!" came the instantaneous reply. "I can't argue with that; you have the best nose I know," I answered back. We giggled at how I can't smell anything but she can smell a garbage truck a quarter mile away. I sighed when thinking back at how she loved McDonald's french fries but couldn't go in the place because the smell of hot grease would make her sick. Or other times when just opening a can would drive her out of the house, but who would blame her after a year of practically continuous nasogastric tube feedings. "The last two are kind of hard to remember," I said while sticking out my tongue. She picked up the clue. "Taste?" she yelled. Ah yes, tasteone of our biggest enemies. Nutrition went out the window early on in exchange for any calories that could make it past her tongue. Raw chocolate chip cookie dough for breakfast? No problem. Chocolate muffin and cream at midnight? Sure. Butterscotch pudding everyday meal for a week? Sounds great. I can't even guess how many times we went out to eat and all she would have was half and half creamers. "There is one more sense that helps us experience the world." I prompted. She had a puzzled look so I hugged her and stroked her hair. I whispered in her ear, "the last one is touch." I love to hold you in my arms. She smiled. As her head rested on my shoulder, I reflected on our on-going battle against childhood cancer. The terrain seemed to be ever changing. Our senses seemed to be continuously assaulted. Through it all my Tori seemed to have every sense altered. Some have been given back and some will never be the same. Hearing aides now help this sense as cisplatinum took away some hearing forever. Her vision taken away then returned will always be at risk by cataracts from treatment. She lost some feeling in her legs to a vincristine induced peripheral neuropathy. Even months after her last treatment the sensation on her soles is not the same.
"You do?" was my surprised reply. Tori solemnly nodded her head yes. I looked into her eyes trying to decipher what could she possibly be thinking. I knew from the serious expression she was quite earnest in her belief that she had a sixth sense. What could it be? I had no idea. I knew I was going to have to ask. I wanted to preserve her self-esteem. Since we all know that the body only has five senses this would have to be worded very delicately. "Tori, you have a sixth sense that helps you experience the world around you?' Again she nodded even more emphatically than before, but those lips were sealed. At a loss at what to do, I finally asked. "What is it?"
The reply…. ![]()
"A good sense of humor helps us in many ways. It helps us understand the
orthodox, tolerate the unpleasant, overcome the unexpected, and survive the
unbearable." ![]()
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