Caregiving

Kevin had an appointment in center city recently. Yes, pushing an adult in a wheelchair through Philly when my car said...(checks notes)...104 degrees. Whew!

Many of his doctors teach and do research. And, he asked us to participate in a study they're doing about disaabled kids who have to transition from pediatric to adult providers. I said yes, of course. Because this? This is exactly where we are. And it’s hard.

On the drive home (in traffic because the city was teeming with tourists), I had time to think. And it hit me just how long I’ve been doing this. Kevin is my first. I don’t know parenting any other way. It’s always included a side order of caregiving, case management, and explaining his diagnoses to strangers who may or may not be helpful.

Honestly? I can’t remember what it’s like to just parent.

And maybe you can relate. Maybe you’re in that space, too, where caregiving has become so automatic, you forget there was ever a time before it.

Here’s the thing I want to say to all of us: This work we do, this invisible, exhausting, often unrewarded work of managing someone else's complex needs, is not nothing. It’s not just “part of the job.” It’s an entire second job, one that no one trains you for.

But here we are. Still showing up. Still advocating. Still sweating (literally and metaphorically).

So maybe the lesson in all this traffic and sweat and research study participation is this: just because something has become your “normal,” doesn’t mean it’s not extraordinary. You are doing extraordinary things.

Take a moment to notice that. And then, go pour yourself a cold drink. Preferably indoors.

Related: The Extraordinary Burden of IEPs on Moms.

Rest, but don't quit.

LL

*Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.