I am thrilled to share that today’s post can be found over at the wonderful Brain, Child Magazine.
Category Archives: Relationships
Staying Home
Rob and Scarlett are going camping tomorrow with her kindergarten class. Although there are some moms going, it’s mainly a dads’ and daughters’ trip, so even if I didn’t have ALS, I wouldn’t be there. And that makes it easy for me to imagine what I would be doing this weekend if I wasn’t in this wheelchair.
A long run. A visit to my new niece. Maybe a drink with girlfriends. Sleeping in.
Certainly not having a caregiver arrive at noon on Saturday and stay until my family gets home on Sunday. To feed me, brush my teeth, put me in bed. I’m not trying to have a pity party, but I can’t help sitting here thinking this is too weird to be real. I used to have a life, and it didn’t revolve around needing constant care.
I’m glad they’re going camping, though. It will be fun for them to spend time together, away from the constraints of my reality. Nice for Rob to get to know other parents in an environment where he’s not worried about taking care of me. This is a theme that’s surfacing more and more often in my mind. I can’t escape from my disease, but that doesn’t mean my family shouldn’t be allowed to. Read More>
My Fiona
She’s here, she’s here, my little niece is here! My rockstar sister brought her into the world on Saturday morning, and she has spent the last five days being perfect. Please, just look at this face.
Her name is Fiona Catherine, and I’m allowed to call her Fee, but not Fifi.
So, naturally…
“Come, Fifi,” I say in an important voice, whenever anyone offers to put her on my lap. As if we are off to the country club to meet her friends Binky and Peroxide. As if we are having tea with the Queen.
“Fifi makes her sound like a dog,” my sister complains. But this is not a good argument for me, because my own daughter’s nickname is Scout, and although we were thinking Scout Finch from To Kill a Mockingbird, it turns out to be a very doggy kind of name.
The week after Scarlett was born, my grandmother called to tell me that not one, but two sitcoms she had watched that night featured dogs named Scout. She cackled into the phone and hung up. Read More>