It looked like fun to my four-year-old eyes. My two older brothers, Stephen and Michael, would lie on a slant board and tune into a favorite TV show. Then Mom or Dad would begin clapping on my brothers' chests. I could hear the laughter coming from the back room, and I wanted to be part of it. I would try to slip in unnoticed, but, more often than not, my brothers balked as soon as they saw me. I think they were uncomfortable coughing up mucus in front of me, but I didn't realize that at the time. I just knew I wasn't welcome. My folks, wanting to minimize my brothers' distress, shooed me away. “You don't need therapy, honey. You don't have CF.” Out I would go. On my own.
Those were the days before therapy vests. My parents had to perform airway clearance manually. Most of the responsibility fell to my mother; every morning and every evening she would pound on my brothers' chests and upper backs until she could barely lift her arms. The message to me was clear. She did this because she loved my brothers. She wanted to keep them healthy. And the conclusion was obvious as well: if you loved someone, you gave them therapy. So I asked my parents if I could have therapy, too. They declined. “We just don't have time sweetheart. You understand.”
But I didn't understand. I just knew that I hurt. I had no other siblings and few friends. I had no one to confide in. But we did have a large teddy bear named Wally. I would lay Wally gently on the floor and give him therapy. I wanted Wally to know I loved him.
Fast forward 30 years …
My husband and I were already the proud parents of three-year-old Katherine when we welcomed our second child, Elizabeth, into our home. A few months later, our sweet Elizabeth was diagnosed with cystic fibrosis. My first thoughts were, of course, for Elizabeth. But I also ached for Katherine. The loneliness, the sense of isolation, the feeling of being unloved -- I had struggled with that legacy for years. Elizabeth's medical issues would, appropriately, demand most of our attention. But could I also capitalize on my own painful experiences to help my healthy daughter?
I carved out time just for Katherine. Sometimes we would head to our favorite coffee shop for a cup of hot cocoa. And sometimes it was just five minutes reading from a special book in a private hideaway I made for Katherine under the stairs. That time was precious. It was sacred. I needed Katherine to know that she was loved, completely loved. Katherine is 21 now, and it hasn't always been easy for her. But she is loved and, just as important, she knows it.