I’m on my way to Starbucks. It’s sunny and I’m rolling down the sidewalk to get my coffee but more importantly, to be a part of my community. The sun is warm on my legs; I’ll miss this in January where there will be grey snow to maneuver around in my wheelchair.
I get a text from one of my caregivers asking for a day off in two weeks. I reply back saying I’ll text the other caregivers and get her coverage. No big deal.
“Hi, Monica,” I say.
“How are you?” the barista asks.
“Good, how are you?”
“Great, my daughter and I are planning a vacation together,”’ Monica replies.
One of my buttons on my communication device has, “good for you” programmed to speak once I press it. That is what I want to say so I press that button. I program every single button, so my device only has phrases that I say. I delete the generic stuff the device comes with.
“Thank you,” Monica replies.
“What’ll it be today?” she asks.
“A skinny caramel macchiato with coconut milk and a pump of white mocha.”
She puts the order in, and I roll off. It’s only five minutes later and another caregiver texts me with a request for a day off. Was it a full moon last night? No, the real reason is everyone wants one last long weekend before the leaves start to fall and autumn comes with its busy schedules. I have to remind myself that God knows what is going to happen before I even send out the texts out asking for coverage. Still, it’s a weight on my shoulders.
After my caregiver leaves for the day, I have Zoom meetings all afternoon. One meeting is with my writing coach and other is for the Elmhurst University Alumni Committee. I’m living my best life in these meetings. They are what I want to do not what I need to do in order to maintain my independence.
Looking at the calendar, my mind goes to who is typically available on those days. Carrie* and Samantha* are available for the one day and I could ask Charlotte* and Miranda* to switch days since they usually are able to. Two hours go by as I am emailing my orthotist (the guy who does my braces for my feet) and emailing my physical therapists regarding next month’s appointments and the occasional YouTube video because why not? I get a text from the library saying my book is ready to be picked up. Yay!
It’s suddenly 6:00 and my evening caregiver is here. She’s making pesto with goat cheese for me when I ask her about the days that I need coverage for.
“I think I can do that Saturday but let me check because I don’t want to say yes and then no,” Carrie says.
“I appreciate it,” I reply.
My phone chimes and Charlotte and Miranda are pretty sure that switching days will work. I sure hope so or its more work for me.
Regardless of what happens, I have a devoted roommate who doesn’t mind helping now and then and if I really need them, my parents live forty minutes away.
Caregivers calling off and having to get them coverage is a round the clock job. It’s the most exhausting part of being independent. However, the parts of my life that give me energy and life are you, my wonderful readers. You make it worth it.
Love,
Hannah!
*These names have been changed to the main characters of the TV show, Sex and the City, simply for my enjoyment.
