Category Archives: Parenting

Hands Off

Scarlett was playing her keyboard yesterday, which usually just means pressing a button and dancing to a string of prerecorded songs that make me want to drive my wheelchair directly over the instrument after about ten minutes. But this time, she brought some more creativity to her musical endeavors.

“Mom, listen,” she said to me. “The duck is fighting with the bird.” She pressed the lowest key and the highest key, creating the sounds of two loud animals becoming increasingly annoyed with each other.

“What are they fighting about?” I asked.

“Food.”

Then the coyote was fighting with the woodpecker. Or something like that. There were a few more battles.

“AND NOW ALL THE ANIMALS ARE FIGHTING!” she screamed, throwing her body across all the keys. Cacophony. Read More>

|Categories: Life, Parenting, Progression | Tags: , , , | Permalink

Dispatches from Tahoe

Sunday afternoon, Easter: Our mobility-converted Honda Odyssey is climbing into the Tahoe area, and we can see snow flying off of the windshields of cars coming down the mountain on the other side of the road. We keep climbing and suddenly we are in the snow, light flakes falling, but enough to inspire Scarlett to launch into Let It Go. It really doesn’t take much to get her to sing that song. “Snow glows white on the mountain tonight!” she crows, and when she has finished the song, she starts it again. And again. Also again. I blame jelly beans.

Monday: We’ve come to the snow for our spring break, although I’ve discovered via Facebook that everyone else we know seems to be in Hawaii this week. After a tough season in Tahoe with barely any snow, there are now “two feet of fresh powder at the summit.” Those words are in quotes because I heard someone else say them. I don’t talk like that. I was always a reluctant skier; once I got going, it was fun, but I never loved it. You can read about my last ski experience here. It will clue you into why skiing is not something I miss very much. But having written that, I feel it necessary to add that there were times, skiing down a simple blue run, when I felt so graceful and so peaceful that I could see why people obsess over the sport. That doesn’t change the fact that chair lifts are scary.

In the afternoon, we teach Scarlett how to play Old Maid. She wins two games, and Rob has a talk with her about sportsmanship. Read More>

|Categories: Life, Parenting, Relationships | Tags: , , , | Permalink

Jodi

I’ve lost another friend to ALS. Jodi Oliver was diagnosed in May 2013, at 44 years old. She died last week, on April 2, 2015. It was just two weeks after our friend Trickett Wendler died, and so it has been a particularly rough time in my ALS life.

Jodi was another mom from my Facebook group. You’d think there were a lot of us, based on the writing I’ve done about the group, but there were only five original members. Now there are two left. Two. I’ve equated it to a squadron of soldiers, but really it’s not. We didn’t enlist, and no one ever tells us that there’s a chance we will get out alive, go home, start over.

But if we were a Band of Sisters, then Jodi was our Sunshine Girl. She lived in Orange County, California, had a golden smile to match her hair, and loved sunflowers. After her diagnosis, she befriended a producer for the movie You’re Not You, about a young woman with ALS, played by Hilary Swank. When the producer, Alison Greenspan, invited her to a premier, Jodi was so excited. “I will probably have security surrounding me cause I tweet constantly,” she told our group. Read More>

|Categories: Faces, Parenting, Relationships | Tags: , , , | Permalink