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.
Our hotel is a beautiful place, tucked into the woods of California’s wine country. It is 100° here, and I’m sorry but that is gross. I mean, it’s one thing if you can walk around in your sandals and your shorts, or your cute summer dresses, jump into the pool when you get too hot, and lift a frozen drink to your lips. For me, arriving in Uggs was clearly not a good idea, but they happen to be the only shoes I have. It took a few breaths to get used to the new, thicker air. It took a few breaths to look around at lunch and realize that the other people were successfully feeding themselves. I tried, with trembling hands, but pretty quickly gave in and let Rob fork salad directly into my mouth. It took a few more breaths to understand that I couldn’t swim with Scarlett and could only watch from across the pool as she yelled “Hey Mom, look at me!”
I felt this little ball growing in my stomach, rolling around, all at once smooth and spiky. Smooth if I could just appreciate this time with my family. Spiky when I started thinking about all the things I couldn’t do. Elbows up on the side of the pool, Scarlett started a conversation with a woman next to her, the particulars of which I could not hear, but I did catch the punchline. “So it’s a good thing I didn’t die.”
The woman laughed, and I couldn’t help it, I laughed, too. The ball smoothed. When Scarlett got out of the pool, I asked her what the conversation had been about. “My allergy to penicillin,” she said, as though it should have been obvious. I need to mention here that Scarlett has never had a near-death experience, but she is very proud of this allergy that once left her covered in hives.
It’s not an obviously funny story. But my problem, I decided, is that I think too much. So I took a nap and the ball in my stomach settled down. Later I poured wine on it, and it got very flat and comfortable.
This evening, as we walked/rolled home from a really lovely dinner at a lakehouse, listening to the crickets, I maneuvered across the very dark path in the wheelchair, feeling good. It wasn’t as easy to get here as I thought it would be, and I still wish that I could be the one doing the work to get ready, instead of creating more work for other people. But I don’t like spikes in my system, and I know that what I can do is be present for my family and enjoy the time we have together. Even when I’m napping.
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Whenever I read these moments of yours, thinking of you, your laughter, your love for Rob and Scarlett, it lifts me up. I love the way you write. I love the things you write about.
Thank you, Richard! Love to you.
Enjoy and relax….xoxo
You are unique Sarah. You write with such openness and honesty. Your mindfulness and love for your family, your observations ( Otto on the forbidden furniture), your ability to smooth the spikes are spectacularly inspiring, beautiful.
Sarah,
I found you through Richard. I found Richard because of own fathers encounter with this terrible disease. My father was a warrior like you and Richard. I think that is all you can be with it. I have seen and now know how precious life is. How difficult everyday tasks have become for you and all those that face this disease day in and out.
I thank you and Richard for being the voice for my father and all those that went before him. You were given this gift for a reason. I know he cherished his life more, his family, and his wife in these everyday moments you share so beautifully with us. I am thankful he trusted in God to bring him and he no longer suffers.
I will continue to pray for a cure for you, Richard, and all the warriors of ALS.
Amy
thank you so much for sharing. I love your writing and humor. I was diagnosed in 2014 after 2 years misdiagnosis. Not in chair yet but fading.
You always know just how I feel.