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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."

My husband, the actor

No, this isn't him; this is Charlotte. It's the only picture I got before my batteries died. Stupid camera.

New fascination

Making Hot Wheels formations. Of course, it's better with the sound effects.

Medical supplies...or toys

A cuddle with Grandpa

Quite a pair...and they're getting better at communicating via ALS charades.

My son, the actor

Despite a moment of panic when he couldn't remember a line, the kid made a fantastic Haman. Wonder why he always ends up playing the villain...?

Junior First Lego League

We spent our (early) Sunday morning with the Super Nano Explorers team! For their entry, they made a building, then zoomed in to make part of the building's elevator shaft, then zoomed in more to make the elevator's control panel. At the competition, the reviewers assigned the challenge to zoom in or out one more level; the kids decided to zoom out and make a town. The children who took two months to decide on one building (the three boys on the team were only children, if that gives you any idea of how the teamwork went) threw together a pretty cute little town in 30 minutes!

Gotta love deadlines.

The bottom photo might be Ethan flirting with a judge...don't tell the other teams!

Happy birthday, BW!

For Becky's birthday, we went out for pedicures...and then had a little cake in the park. There was even a pinata...a leftover from her son's last birthday when it was too rainy to use it. The kids had a great time, and my dear boy scored me some Smarties. Yum.

Recycled art

We were a little skeptical about some of the entries in the recycled art contest. For example, does it really count as recycling if you make something out of disposable stuff that is brand NEW?? Teri pointed out some plates that looked like they'd never touched food. And I hope the person who made the fabulous kimono didn't go to Macy's and Staples and ask for bags for an art project.... Not that I am a paragon of recycling myself.

Some set!

We stopped by the set of Charlotte's Web for a quick peek. Lots of really cool old boards. And, of course, an awesome web awaiting a gifted writer.

Comfort?

It's hard to tell exactly where all the legs are in this picture, but it always amazes me how cats can seem comfortable in such strange, twisted positions.

Read on

No more window-sill-in-spine when we sit up in bed and read! The headboard was a fun project--a chunk of plywood, a strip of foam, some soft fabric and a bunch of staples. Very comfy. The colors aren't very accurate...the "color scheme" for this room is supposed to be sort of a turquoisey blue and a mossy green. But I am decor-challenged. Still, the project passed the most important test; it was a great place to read Little House on the Prairie. (I look forward to this part of the day way too much.)

Origami outburst

Here are a few crane attempts. The giant lightbulb, by the way, is from my desk at work. I think it is supposed to remind me to get ideas. Bright ones. Of course, the bulb inside it is about .5 watts, so if I don't, it's not really my fault.

Whitman Mission

The birds were going crazy, the weather was perfect, and what 8-year-old boy wouldn't love visiting a historical site that features a massacre?

Best buddies

Samantha lives across the street and Matthew lives right behind her. How lucky can a kid get? Which reminds me, there is a house for sale around the corner if any of MY friends are in the market....

And one more thing...

Thanks to the blog visitors from Salem, Walla Walla and Minnesota who didn't give up on me during the March funk!

A boy and his pig

Here's a cameraphone shot from our trip to Seattle. The dad and the boy walked all over Seattle, and my parents and I walked all over Virginia Mason seeing ALS specialists. That night I joined the guys on a walk to Pike Place Market (the market was closed, but the pig was there) and the Spaghetti Factory. The next day Dad rested up from all his appointments while I joined the guys on a walk to the ferry and a ride to Bainbridge Island. That night we went up the Space Needle, which I was shocked to find was $37 for the three of us. Is it just me, or is that a lot??

I even managed to talk the spouse into a visit to Uwajimaya, where I bought three packs of origami paper. After we came home, I made 17 origami boxes and 5 cranes. (This origami outburst was apparently part of the March funk, because I'm over it now.)

There's nothing more heartwarming...

...than a boy and his fake dog. Or maybe I should say fake aunt's dog. Or borrowed dog.

We don't have a dog.

I [heart] barns

When we're driving in the country I can't help sticking my camera out the window for barn pictures. Or wishing we'd brought it along.

Boo Radley tree

Somehow I always expect to find little messages tucked into this tree.

ALS fundraiser

Charlene (also known in our family as "the angel") organized ALS fundraisers and helped with a luncheon in celebration of my dad's 9th anniversary with Principal. Here she's presenting him with a check to be given to the ALS Association in his name. The employees at Principal raised over $1,500.

Dr. Jane's visit

The Quite Fabulous Dr. Jane Goodall came to Pullman, so we naturally had to go. She was inspiring like church. The boy and I signed up for a group and are trying to think of some Roots & Shoots projects. The line to meet her was so long that for her to sign our book, she would have had to sign until about 4 a.m. So we settled for a picture of her and Mr. H.

Excuses, excuses

I do have them.

1. March funk.
2. Lost camera.
3. Out of town for a week.
4. Unicel. While my new phone is way sexier (sooooo cute, and opens like a Star Trek communicator) than my old one, I can't e-mail photos to the blog now, and that used to be my fallback for vacations and procrastination updates.

Below the mantel

Above the mantel

One great day

We thought a drive to Pendleton would be beautiful today (snow on mountains and everything). It was a little foggy for the drive to be perfect, but we went to the Tamastslikt museum and saw an amazing percussionist (who played a beautiful song on a plastic hubcap he'd picked up by the road on the way here) and an even more amazing Native American storyteller (who told some spellbinding stories especially for Ethan, who asked "Do Indians ever use songs to tell stories?"). After this we were starving (it was about 5 and we'd missed lunch), so we went to a cafe in Pendleton and had super good pizza. And root beer. Mmmmmmm. While a bunch of banjo, bass and fiddle players played folk music. On the way home the moon was huge and gorgeous...and deserved a better camera.