Finding Balance in a Life That Never Slows Down

For years, I worked on optimizing my self-care—figuring out exactly what I needed to manage the stress and chaos of this life while still prioritizing my daughter above all else. That was never a question. No matter what, her needs came first. The challenge was making sure my needs were still met. How do you ensure that your cup is always full so you always have something to give? How do you avoid feeling deprived or depleted?

For the better part of a decade, I was good at this. I set things up so that I was well taken care of. I was lucky and fortunate to be able to do that. I had a system in place that allowed me to not only manage but thrive. But then, something shifted. It was subtle at first, but I felt it.

For me, it started in late 2019 as my daughter’s needs began to change. Many parents of children with her disorder reported that things became easier as their children grew older—fewer behavioral challenges, more settled routines, greater efficiency in care. And while that may be true in some ways, it wasn’t my experience.

Yes, Sydney grew and developed, but the core challenges remained. A profound cognitive impairment coupled with a genetic predisposition to severe behavioral outbursts meant that while some aspects of her care changed, the demands remained just as intense—if not more so. As she neared adulthood, the support systems that had once been in place slowly began to dwindle. And with that, the balance I had worked so hard to maintain started slipping.

What began as a slow leak accelerated during the pandemic. Suddenly, the foundation I had built for my own self-care started to crack. I went from thriving to surviving. It was a stark contrast to how I had been living before. I had spent years writing about how I had learned to not just survive this life but to truly thrive within it. And now? That no longer felt true.

I could feel my nervous system becoming depleted, running on empty. The constant stress of caregiving—of navigating behavioral outbursts, anticipating crises, advocating for the right support—was wearing me down in ways I didn’t fully understand. My body was firing in fight-or-flight mode so often that I lost my ability to regulate.

I don’t know exactly where I stand when it comes to medicine and the mind-body connection, but I do know this: It’s hard to see, in real-time, how stress impacts your health. And it’s infuriating to hear well-meaning advice like, “ You need to practice mindfulness and meditation” when your nervous system is constantly in overdrive. How do you “calm down” when your adrenaline is the only thing carrying you through?

I know it’s difficult for those who don’t live this life to understand what it truly means to function in a state of chronic caregiving stress. And it’s even harder to articulate in words what it feels like. But here I am, two decades into this life, and I can say this without hesitation: It has taken a toll.

Recently, I have developed some medical issues that now require ongoing management. No one can say for certain that they were caused by stress, but stress certainly didn’t help. Years of absorbing the weight of caregiving, of adapting, of never fully turning off that internal survival mode—it all eventually caught up with me. My body has been affected in ways that can’t be ignored. And now, much like everything else in this caregiving journey, I have to adjust.

I always like to end with some hope for what’s next or some words of wisdom on how to solve the issue. But for the first time, I truly have no idea how to make chronic caregiving less taxing. When I look toward the future, I don’t see an end to it either.

When faced with situations like this, I find myself turning to simple mantras: It is what it is. I can only do what I can do. What will be, will be. They may sound simplistic, but when you really think about them, they are powerful. They release the pressure of I should be doing more. I need to be doing this. If only I had done that. All of that just adds to the enormous weight I’m already carrying.

Sometimes, there is no perfect solution or magical fix. Sometimes, you just have to accept that it really is simply what it is. And maybe, just maybe, that acceptance is its own form of self-care.