My name is Ethan, and my grandpa has ALS.
I hate ALS
It’s sad for someone to have Lou Gehrig’s disease and horrible for family members too. My grandpa chokes when he tries to eat and drink. He falls down. He can’t use his hands to brush his teeth or send me e-mails. He has a feeding tube because he can’t swallow, and the only real food he can eat is applesauce and sometimes hot cereal. He can’t smile.
He used to be able to work with wood and help us fix things, and whenever Mommy had trouble, she’d call him. Five years ago, he built me a playhouse. But now he can’t build things like he used to. And sometimes I’m scared of talking to him on the phone because I might not be able to understand him and answer his questions.
Grandma has had to call 9-1-1 three or four times to get help when he fell. She is always working hard, because taking care of the house and Grandpa is hard work.
We’ve all been sad about him having ALS, and whenever I start talking about it to Mommy, it makes me cry. But the good thing is I still have fun with my grandpa. After we found out he had ALS and would start getting worse, we planned a trip to New York with him. We had lots of fun there. I helped drive his power scooter in Central Park, and we went up the Empire State Building. We go to Spokane on many weekends to see him, and I can hold his hand or we can watch the Speed channel together.
I’m also glad that people from the ALS Association in Spokane help Grandma so much. They make food for her and visit. They help get the things my grandpa needs, like a power chair and a lift so Grandma doesn’t have to call the firemen all the time. They help her figure out the insurance papers and which doctors to talk to. And all the people in the group know what ALS is like, so they have lots of good ideas about how to have a better life with ALS.
I pray for my grandpa every day. When I grow up I hope that someone will find a cure for ALS. Maybe it will be me.
Pictures: From Julie S K
1. Resonare Ringers from Ethan's school.
2. WA-HI baseball players and their coach helped hand out materials and light the candles.
3. The picture of the field while still light is with only about 1/2 to 2/3 of the people there.
4. The speakers sat on the bleachers during the program and while the names were read.
5. Carrie was right...I thought we'd be circling home plate, but we had enough people to circle the bases.
