SuperNiece

Emily's 8!

Candlelight vigil for ALS

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.

American Automotive Museum

The Planets

Our family has been waiting for this concert forever--it's Ethan's favorite CD! Unfortunately, the symphony runs very late and Saturn sounds like a lullaby....

Why I have nothing to wear

Have I really not posted since April 26? I also haven't done laundry for at least that long. Which is what I planned to spend my Sunday on, but instead I kept coming up with creative ways to avoid it. Not that I have to haul it to the stream and pound rocks or anything, but it is still a pain, especially the folding-and-putting-away part. Because the closet is full. Even though there is nothing to wear.

Oh yah, the picture. One of my avoidance tactics was taking the neighborhood children to the park. Samantha was dressed in tiny top and swim shorts, Ethan was somewhere in the middle, and Matthew had on long sleeves and long underwear. I should add that I was tricked into this voyage...Samantha came over to invite Ethan, and when I said "sure," she told me, "My mom said we could go if you would take us."