Living with ALS

I was only 5 at the time and now i am 15. My dad was the nicest guy you would want to meet. I remember him coming home and telling me “Danielle I have a bad cold and they gave me something and i am going to get better.” I thought that was geat! well better turned in to not being able to move and then having to get a feeding tube and then not being able to talk. I had to guess at what he was saying.

My mom said that she was never going to put him in a nursing home and she didn’t! she had to help him up to go to the bathroom. She would feel so bad to eat in front of him that at night she would fall asleep with M&M’s in her mouth. Then she would do the same thing the next day.

It was her birthday and she woke up and went to go check on my dad and she found him dead. I came back home and found all these cars there but i thought cool my mom is having a birthday party! well again i was wrong. She sat me down in my room and told me “Honey do you remember that we were going to put daddy in a special home.” i said “yes” thinking he got better. My mom said “He is in heaven with God.” i started to cry. She also told me somthing that i didn’t understand until a little later in life she said “His dieing on my birthday is the best gift he coud of gave me” I thought how dare you say that. I also thought that it was my falt that he died. i told my mom that and she said that it wasn’t. I guess if it wasn’t in believing in God I would be really angry right now.