Category Archives: Life

Ice Bucket Challenge

Rob and Scarlett are dueling over music right now. He’s controlling the Sonos system in the house, which means he basically wins, but she’s giving him a good run on the back deck with Let It Go, tinny on my cell phone, but somehow still SO LOUD. Rob turns up The Black Crowes. Scarlett clears her throat and gives it her Elsa all.

The battle flips to Margot and the Nuclear So-and-So’s versus something horrendous from Kidz Bop. Obviously this seemed like the perfect time to sit down and try to write.

Rob is still on vacation this week, but we’re home, just dealing with end-of-summer things: purchasing school uniforms, contemplating how to handle an $875 parking ticket, continuing our efforts to train Otto (and wondering if his training could include a court appearance to argue that ticket down to a more reasonable amount. This is a story for another blog, especially if Otto does end up being our lawyer.)

Can we really now be listening to both Bonnie Raitt and The Wiggles? Why is this happening?

Rob is opening a bottle of wine. Now that’s a sound I can handle.

Today was Ice Bucket day. I knew we would be doing the challenge again, but Scarlett was vehement that she and Otto be our family representatives in the chilly endeavor. So there they were in all their glory, (slightly different from their current status running in circles together listening to Shut Up and Dance With Me while Rob tries in vain to calm things down with Tom Petty’s Wildflowers. This is not an “everyone wins” situation.)

A reprieve. Scarlett and Otto go deeper into the yard, their noise receding until all I hear is Rob’s REM. The wine is pink and cold, the grill is filling the yard with sweet and smoky smells, and a breeze is blowing towards my spot at the dining room table. I think I’ll leave it at that, enjoy having only one song in my head, and just share our #icebucketchallenge video.

Every August Until A Cure.

Wait. Taylor Swift vs Led Zeppelin? Someone stab me with an ice cube.

|Categories: Cure, Drugs, Life, Parenting, Research | Tags: , | Permalink

Vacation

You want to know what’s not relaxing? Vacation, for Rob. To be fair, vacation for anyone with children cannot be described as relaxing, as these little bundles of energy tend to get up early, ask for things like food, and then want you to watch them and take care of them all day. So it’s just like being at home, but without most of your stuff.

Of course, we have some added stressors, as everyone who reads this blog is more than well aware. I’m sure Rob could have a truly lovely vacation, if he would just travel alone. But instead he brought a puppy, a five-year-old, and his increasingly disabled wife. Not his smartest decision. Not a recipe for sleeping in (or even sleeping through the night.)

You know your situation is unusual when the five-year-old is the second most self-reliant person in the family, and the 12-week-old puppy is handling himself pretty well, too. Sigh. I am the weakest link.

For example, both Scarlett and Otto can at least feed themselves. When Rob finally settles down by the pool to enjoy a sandwich, he has to balance his own food intake with mine. This is a completely new development, and it’s sort of unfortunate that it began when all of our meals are on display. I keep my attention on our table at each restaurant, quietly wondering what other people are thinking of our performance. Maybe they just think we’re really in love? I doubt it, and I don’t care that much (less so every time), but I do wish my husband could enjoy a meal without having to help me enjoy mine. Read More>

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

Into the Woods

Getting ready for vacation is so much different than it used to be. Rob, Scarlett, Otto and I are in Calistoga for the week, a nice drive less than two hours from our house. In short, the perfect,  easy summer trip. But here is a snapshot of our family getting ready this morning:

My sister is over to help me shower. Rob is loading medical devices into the mobility van. Scarlett and her cousin Jack are reading together on the couch, until reading turns into kicking, which turns into yelling, which turns into falling on the floor, which somehow turns into doing a puzzle together. Otto takes this opportunity to climb onto a piece of furniture that is not dog approved. I notice, but say nothing. I am annoyed at my helplessness, my inability to get this act together. The prep takes hours, even though Scarlett packed her own bag, and my assistant set out all my clothes the day before.

My sister cleans out the fridge, and then helps me pack my medicine and a bag of makeup that will never grace my face. But why not bring it? Then we’re finally in the car, looking once again like the Beverly Hillbillies. Read More>

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