The System I Forgot to Build

Caregiving As a Parent — Monthly Discussion Series

Welcome. I’m Sara Clime, and I write Sanity & Systems. This is my corner of the internet where I write the honest conversations, the practical tools, and the steady reminder that you are still a whole person. I default toward systems because, apparently, that’s what’s standing between me and full chaos.

In 2012, my youngest son, T.J., was diagnosed with Duchenne muscular dystrophy (DMD) at 8 years old. DMD is a progressive, degenerative, and terminal form of MD that impacts every muscle in the body, including the heart and lungs. In the time it took for the doctor to deliver that news, I became a disability parent, medical director, full-time advocate, and round-the-clock protector. I was also still a human person somewhere in there. Some days, that felt up for debate.

Here’s what I learned the hard way: a diagnosis will change your entire life. I have also learned that the diagnosis does not get to take over your whole identity. Both things are true. Living in that space is messy, exhausting, and oftentimes surprisingly beautiful.

The binders, the spreadsheets, and the color-coded everything came from absolutely not having “it” together, and deciding I wasn't going down without a fight. Systems became how I survived. Understanding they'd always be a little imperfect became how I stopped being so hard on myself. And writing became how I made sense of the stuff that no binder could fix. Sanity & Systems is all three of those things living in the same space.

When I started sharing on Substack a few months ago, Victoria was one of the first people I met. Her resources, her tenacity, and her genuine heart for connection are a real gift to this community. Being part of this collaboration means I get to keep learning alongside people who actually get it, and that’s making me a better, more authentic version of myself.

Our Team

This discussion is part of the Caregiving As a Parent Community Network, curated by Victoria of Carer Mentor. Each month, one of us hosts a discussion with all of us showing up in the comments for each other and for you.

• Chris B

• Amy J Brown

• Sara Clime

• Anna De La Cruz

• Donna Giles

• Haley Haddow

• Bud Hager

• Cooky Howitt

• Mary Beth Kaplan

• Serena Menken

• Maria Messer

• Denise Servais

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A Little Context If You’re New Here

Back in April, Victoria brought a group of us parent caregivers together and asked a simple question: What if we held space for each other and the people who need to know they’re not alone in this? If you want the full origin story, start with the April 3rd launch article here.

Last month, Maria Messer of Holding Both hosted our discussion, and she gave us a phrase that’s been living rent-free in my head ever since: holding both. The grief and the gratitude. The beautiful and the brutal. Both true, all the time, usually in the same breath. If you missed it, go read it. You’ll thank yourself.

Her question stuck with me as I sat down to think about what I wanted to bring to June. I kept landing on the same place: the thing I built everything around and somehow forgot to build for myself.

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The System I Forgot to Build

I Had a Binder For Everything. I Wasn't in Any Of Them.

I have a system for T.J.’s medications. I have a system for his appointments, his insurance claims, his equipment orders, and the sixteen-step process for getting multiple teams across multiple states to communicate and work together.

I have a binder. I have spreadsheets. Lots of them. I have a color-coded weekly schedule broken down in 15-minute increments, and a one-page emergency document that tells any backup caregiver exactly what to do and in what order, because I learned the hard way that “just figure it out” is not a plan.

I built all of it because chaos has a cost, and I got tired of being the one paying it.

What I did not build (and I’m only now getting honest about this) was a system for me.

Not for the caregiver version of me, but for the actual me. The person who exists outside of the binder. The version of me I somehow forgot along the way. The woman who wants to be known as more than wife, mom, or caregiver. Don’t get me wrong, I take pride in each of those roles. It’s just that Sara, the individual, got lost somewhere between keeping T.J. alive and making sure groceries were bought.

I became someone new almost overnight when T.J. was diagnosed in 2012. Not because I chose to, but because the situation required it. Medical director. Insurance negotiator. Advocate. Scheduler. Researcher. I stepped into every role because every role needed filling, and I was the one standing there.

I was good at it. I am good at it.

Yet somewhere in the process of building every system I needed to keep T.J.’s life running, I quietly stopped building anything for my own life. I told myself that it would come later. I kept telling myself that once things were stable, once the systems were in place, once I had a little margin, I’d get back to, well, whatever that was.

You already know how that goes. Later is a moving target when you’re a caregiver. Stable is a joke. Margin is a myth you tell yourself at 11 pm when you’re finally off the clock for (God-willing) six hours.

So I just kept running the systems I had, and they worked. They genuinely worked. But they worked the way a hospital works: efficiently, functionally, without a lot of room for anything that wasn’t essential.

The systems made life livable. I said that, and I meant it, and I still mean it.

What I didn’t ask was: livable enough for what, exactly?

There’s a big difference between livable and full of life.

In May, Maria Messer gave us “holding both.” I’ve been sitting with that ever since, and here’s what I kept coming back to: I’m good at holding the hard stuff. I actually thrive in the difficult. I’ve had a lot of practice. My friend Amy calls it “circling the wagons.” What I’m less practiced at is actually protecting the good stuff. I’m not talking about simply acknowledging it exists, but building something around it so it doesn’t get crowded out by everything that’s louder and more urgent.

One truth about joy that I have learned in my lifetime is that it doesn’t schedule itself. It doesn’t send reminders. It doesn’t have a prior authorization process or a tracking spreadsheet. It just quietly stops showing up if you don’t make room for it.

Joy is a choice. Joy is a verb and oftentimes takes work and commitment, especially in chronically difficult situations like ours.

I am someone who makes room for things by building systems. So, why hadn’t I built one for this?

I want to be clear: I am not talking about a gratitude journal. I am not talking about five minutes of mindfulness before you hit the ground running. I’m not talking about a new and improved morning routine.

I’m talking about something deeper than that. Something that acknowledges that joy, identity, and a sense of wholeness don’t come automatically when you’re this entrenched in caregiving. They require the same intentionality you bring to everything else. They require you to actually decide they matter and act accordingly. They require you to decide that you matter and prioritize your care.

What does that look like? It looks different for everyone. For me, it’s been small things. It’s a standing block on my calendar that’s just mine and doesn’t get moved for anything short of a true emergency. It looks like permission to nurture something that doesn’t move any needle, like drawing (poorly, I might add), hiking, and reading things that serve zero productive purpose. It’s a question I ask myself at the end of the week that has nothing to do with caregiving: what made me feel like myself this week? Even for five minutes?

It’s not a perfect system. It’s barely even a system. But it’s something. And in this life, something is a lot.

I’ve worked with other caregivers and female entrepreneurs who have felt overwhelmed, not knowing where to begin untangling the lives they have created, in which they, as individuals, have disappeared or ceased to be a priority. I always have them start with an honest audit before they try to build anything. No judgment. No fixing. Just a real look at what’s working, what isn’t, and where the pressure is. I’ve been doing that audit for a long time when it comes to T.J.’s care. I’m only recently starting to do it for myself.

What I’m finding is a version of myself 16-year-old Sara would recognize and be proud to know. That’s already a success I didn’t realize I needed.

If you are interested in this type of self-audit but don’t know where to begin, I have a free resource that walks you through the process I use for my clients. It’s called The LTB Method™ — Love it. Tolerate it. Burn it to the ground. You can find it here.

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Today’s Prompt for Discussion

When’s the last time you felt like yourself? Not the version holding it all together. Not just functional, not just getting through, but truly, recognizably you?

And what would it take to protect a little more of that? Not someday. Not in some future life where finances are easier, and support is actually there. Right now, in this one, within the current circumstances of your life.

1. Drop your thoughts in the comments — however they come out

2. Reply to each other, because someone else’s answer might be exactly what you needed to hear

3. Share, connect, and find each other here

Every one of us is in a different situation. What works in my life might not work in yours. There are no right or wrong answers here. Just a community of caregivers who actually get it, showing up for each other.

The team will be here too. Come find us in the comments.

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Next Up

The next “Caregiving As a Parent” discussion will be on Friday, July 3rd. It will be hosted by Amy J Brown of More Than a Caregiver. You don’t want to miss it.