I was sitting in an uncomfortable, green chair, waiting. It seemed like I had been sitting for a really long time. I was playing with one of my many Barbie Dolls. I remember being a little annoyed at the sitting but trying to behave. My mom had this look in her eye, the one she got when she wanted me to behave. I got this look when we were walking into church and so forth. At this moment, I had this eery feeling that bigger things were afoot.
After the doctor came through the double doors, my family jumped up, really eager to learn the outcome of my father’s tests. Mom explained to me that my Daddy might be sick. I didn’t know what that meant. He had no symptoms I was aware of but my mom always told me the truth. I came home once and Mom asked me what I learned that day, as she always did. This day I replied, “There’s no Santa Claus?” She simply answered, “No” and that was the end of that. No making excuses to cover up my realization. I always liked that about my family. We were always very open and honest.
I knew I could always ask questions. I climbed in my Daddy’s lap and asked him what was happening. He explained that he had Huntington’s Disease. Little did I know, my life was about to get crazy. One of my favorite quotes is, “Change is never easy. You fight to hold on and you fight to let go.” Powerful, isn’t it? Especially here I think.
My Dad fought a hectic battle for his life for 12 years. He lived a lot longer than most people infected did. Infected ...that sounds so harsh. It sounds like something you didn’t mean to get. He was born with this disease. His symptom onset was a lot earlier than anyone expected, unfortunately. He was still the happiest man I knew throughout his struggle. Every Sunday he made it to church, he praised the Lord for the beautiful day, regardless of how unbeautiful he might have appeared. Even though he was very sick, he was alive and that in itself was beautiful.
People loved my father, especially after his death. People would come to me, people I barely knew, and fill me in on their admiration for my father and our family. What were we supposed to do? Sit at home cry at our unfortunate luck? There was no pity here. This whole battle my family was fighting left me with extreme emotional issues. I wasn’t always sad though. I was really proud of the way my family dealt with things. I was jealous a lot. Yes, my dad was sick and yes, I loved when people asked about him, but my family is going through this together. It seemed because I still had a smile on my face, people assumed I was well. There was certainly no smile in my heart. I supposed they couldn’t see that or didn’t care enough to want to talk to me about it. Perhaps they didn’t know how to go about such conversation. I always felt guilty, like it was selfish for me to be upset, my father was the one dying. It pained me most to just have to watch and let it happen. It’s completely unfair to watch someone you love slowly die and have no say...
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