Living With Wolfram Syndrome – Lauren Gibilisco
Well I managed to drive my mom nuts this week. I have many items in my house that talk to me so I can function better. But this week my watch stopped working.
It was a talking watch. Without it I have trouble knowing what time it is. Time is important in our lives. We need to know when to give shots or medicines. We need to know what time it is to eat or even what time it is to take a nap or go to bed. Our lives revolve around the clock. So all throughout the day, I constantly asked my mom “what time is it?” It was a long week for her until my new watch arrived.
When I went to my volunteer job this week I bumped into someone in an office. It was someone else’s office so I didn’t know who it was. That person said you still don’t have my voice memorized yet. She told me she was Barb. When my parents owned their grocery store I had trouble always remembering voices especially because I have hearing loss. I came up with an idea to always say hello and they would have a name made up that started with their first initial. For example, Brianne would come up to me and say “hello Bambi.” Well when I told Barb about that idea I told her to make up a word starting with “B”. She said “I’m not going to call you that Lauren.” Everyone including myself burst out laughing. I said “that didn’t occur to me.” She said she would call me “beautiful” but I told her “brat” sounded more appropriate. Going along with this theme, I was talking to a friend of my moms. She asked if I was going to dress up for Halloween. I told her no. She said “come on, you could dress like a princess and your mom could dress up like a witch.” I told her jokingly “she doesn’t need a costume for that.”
One of my mom’s friends hated thinking of me home alone in our house all the time. I have no friends in this area. So she decided that every other Friday she would come get me and we would go to lunch or dinner together. She has known me since I was 5 years old. I bet she thinks it is no big deal, she enjoys herself. But to me it is a huge deal. It gives me something to look forward to every other week. It gets me out of the house. It gives me someone other than my mom to talk to. So look around, you may see someone who needs a little help. You might think it was nothing but you might have made that person’s day a lot more happier.