A few weeks ago I posted a piece that my daughter had written about me and how she views my multiple sclerosis. In turn, I feel that it is only fair that I share how my son feels about me and my multiple sclerosis. The piece that he wrote was first published in my book, Multiple Sclerosis From Both Sides of the Desk, when he was eleven years old.
The fact that he is now fifteen years old, taller than me and has a physical strength best described as “He doesn’t know his own strength” strong, plays no part in my decision to post his piece.
By Vince P. Macaluso, Age 11
I love it when Dad takes me outside and he catches while I pitch to him. I find it interesting that when my dad throws normally, he throws curve balls even though he doesn’t mean to do it. It’s just his way of throwing. I think it might have to do with MS.
One time my dad came into my class to read. He read a book that he wrote about me. The story was called Diary of the Father of a Fourth Grade Someone. It was about him waking me up while I was dreaming about striking out Babe Ruth. The Babe was brought back to life with chewing gum and a computer. At the end of the book, my dad leaned down, gave me a big hug, and said, “I love you.”
I don’t like it when my dad has to leave on a trip to do a talk about MS because I miss him. He has to leave because he has to do his job. His job is when he speaks about MS to patients and their families. I think that it’s important to those people so MS doesn’t destroy their lives. Knowing this makes me feel less sad.
I really hate it when he doesn’t let me pitch to him or play on his computer or iPhone. Sometimes he has to do his work. I like it better when my dad is not writing so I can spend time with him. But I understand that he needs to do his job.
I don’t like it when my dad wakes up at three or four in the morning to go to work because he wakes me up. Then I can’t go back to sleep. I go and wake up Mom. Then Mom isn’t happy because she can’t go back to sleep because she has to sleep twelve hours, but she only slept nine hours. I notice that he naps a lot. I’m not sure if that’s from MS or not. I get tired sometimes, but I don’t have MS.
I think that all of my dad’s patients are kind because they’re nice to me in the office. They’re nice because they think I’m cute.
I like it when he tells jokes. One time, we were eating dinner. My sister, Abby, my mom, my dad, and me were sitting at the table. Abby said something about something she did at school. My dad made a comment that Abby didn’t think was funny but I did. I started laughing so hard I fell off my chair onto the floor. I didn’t get hurt, but I got angry when my sister and mom started cracking up. My dad didn’t laugh at me. He just threw a towel down to me and asked me to start cleaning the floor.
I think my dad is brilliant because he has MS. I think he is brilliant because he takes medicine to help him. When my dad starts the IV for his medication, I think it’s a lot bloody. I ask him if it hurts when he puts the needle in. He says it stings like a little pinch, but then it goes away. Then he asks me to put the invisible thing on top of the blood-sucking tube. Sometimes he asks me to get him some water and rarely some potato chips. It’s also fun because my mom thinks that I might be a good surgeon if I don’t make it to the MLB. But I really want to be a baseball player in the MLB.
At night, I make my dad get in line to put me to bed. He has to go after my mom. He hugs me and says good night. Then I ask him to get water for me. So he gets water for me. Then we say I love you, and I fall asleep.