When I was 5 yrs old my dad was diagnosed with Metachromatic Leukodystrophy which has caused FTD. I was too little to remember what happened so I don’t know much, but now I can see he is really struggling with lots of pain, whining and is sometimes really mean. Because of how mean he is none of my friends want to come over and play, so I have to go to their house, at least for most of my friends.
I have been bullied at school because of his disease, but I know he can’t help it. One girl still bullies me sometimes. So I have maybe three friends at school. I sometimes like to take care of my dad, but it is hard. He screams and yells and whines about his pain a lot, that is the part that bugs me the most. He is a Nintendo freak which he plays 24/7. When he gets frustrated with his games he erases it and starts it over, if my sister isn’t home to help him. The best part about having a sick dad is when he plays video games he will need help, so we can help him.
Even though he is my dad sometimes I just want to get rid of him. Sometimes he just makes me feel uncomfortable. But I just need to ignore it. One thing, he gives me a lot of anxiety because I am scared to go anywhere without worrying about him. But I can live with anxiety as long as he is alive. It is hard knowing he is going to die soon, that is what I am worried about the most, that is why I hate him being sick.
Because of this disease he had to move into my room so now I have to sleep in my sister’s room. I didn’t like that but I had no choice. It is better to sleep with someone than by myself anyway.He always has to go doctor’s appointments, when he is sick my mom has to miss work while we are at school worrying about him, I am the only one that goes to school when he is sick because I hate missing school. In the morning we have to get his breakfast for him because it is too hard for him to get out of bed from being in so much pain. He follows my whole family around everywhere, especially my mom.
I am glad my dad is alive, even though he can’t remember much he is my dad and I appreciate him. When I was eight he almost could not baptize me because he couldn’t remember what to say. He was able to baptize me because he had help with the prayers. That is the only part I remember. Now I look back and say, “I am glad he’s alive.” Now that I am twelve I am responsible for him when I stay home from school or whenever it is needed.
I hate telling people about my dad because of the bullying. Now I write my thoughts and expressions in a journal. We have a family journal where we can write things to each other and how we are feeling without saying it in person. I hope I told you enough about my dad but I need to give time to the others, so I will close it by saying it is hard living with my dad but I love him and care about him even when he yells and is mean.Back