I Didn't Give Up on My Dreams. I Was Too Busy Surviving.

Fifteen years ago, I was a stay-at-home mom with two young children, one of whom was still a toddler. I was living the life I thought I wanted, being that mom. Except I was floundering.

The Life I Thought I Wanted

As much as I wanted to be that mom, I hated the reality of what that entailed. At least full-time.

I loved my children. That was never the question. But I craved connection. I craved creativity. I missed my photography, my crafting, my writing. I missed being able to pursue the things that made me feel like a whole person outside of being a mother and caregiver.

And I didn't know how to reconcile those two parts of myself.

When the Island Disappeared from View

Around the time Katie was born, I started writing a blog. When I started feeling so discontent, my husband, Dan, encouraged me to turn what I was writing into a book.

So I did.

That book would eventually become Twice Rare, my memoir about our family's journey through rare disease, disability, and advocacy. But it would take me fifteen years to finish it.

Not because I didn't want to write it. Not because I'd stopped dreaming about being an author. And certainly not because I had run out of things to say.

Life happened.

There were diagnoses, caregiving responsibilities, financial crises, job crises, behavioral challenges with the kids, and multiple moves. I was so deep in the weeds of caregiving and surviving that I couldn't see a way past the next day, let alone imagine what my life might look like five or ten years down the road.

My own vision seemed so far away that I couldn't pull my head out of the water far enough to see that the island was probably close enough to swim to if I tried. Every time I thought I might be getting ahead, another wave pulled me back under. And when you're constantly trying to keep your head above water, it's difficult to find the energy to swim toward something you can't even see.

But the island was still there. And so were my dreams.

Choosing a Different Way Forward

Fast-forward fifteen years.

The turning point wasn't some magical moment when everything fell perfectly into place. It wasn't that the kids suddenly needed less care or that our financial struggles disappeared. In fact, it was a combination of a toxic job and the realization that my husband and I were finally making enough money, barely, through Colorado's paid parent-caregiver waivers that I could afford to leave my job.

I had reached a point where I realized I didn't want to continue sacrificing my mental health for a paycheck, even if it was a good one. So I quit. And I started pursuing the life I had wanted for so long.

Now, before anyone thinks this is a story about how I quit my job and everything magically worked out, let me be completely transparent. This is not an option available to every special needs parent or caregiver. Paid caregiving opportunities vary by state, eligibility, and the support needs of the person receiving care. I recognize that we had an opportunity that many other families simply don't have. And even that opportunity has become increasingly uncertain for us.

We're beginning to pick up side jobs and remote work to supplement our income while I work toward making a living from my writing. Some days, the finances are still downright frightening.

But here's what I've realized. I would much rather work multiple jobs that make me happy than return to one high-paying job that destroys my mental health. And perhaps the biggest revelation of all?

I don't have to choose between being a caregiver and being myself.

One AND the Other

For years, it felt like it had to be one or the other. But it doesn't. It can be one AND the other. I am still a caregiver alongside my husband, and I will continue to be one for many years to come. But I am also a woman pursuing a healthy body through training for races. I've completed a half marathon, and I'm already looking toward my next physical challenge. Climbing the 2,768 steps of the Manitou Incline. Hell, I may even be crazy enough to consider completing my first full marathon next year.

I'm a creative who has rediscovered the joy of going out with my camera, or even just my phone, and capturing the world around me. I'm a writer who is finally telling the stories that have lived inside my head for years. Some days, the scenes for my fictional characters come so quickly that I can barely write them down fast enough. I'm an educator and scientist with a whole lot left to say about education, science, and the importance of questioning and exploring the world around us. I'm an advocate who continues to support parents wherever they are on their journeys, while also seeking guidance and support from those who have traveled further down the road than I have.

And I'm still a mom. A mom whose children have significant support needs. A mom whose family responsibilities aren't going away simply because she has rediscovered her own passions. All of those things can be true at the same time.

Here's what has surprised me the most. I thought that adding all these interests and pursuits back into my life would overwhelm me. Instead, I'm discovering that they're energizing me. My passions aren't draining me. They're giving me something back. That doesn't mean I never get tired, frustrated, overwhelmed, or worried about the future. Believe me, I do. It means that for the first time in a very long time, I feel like I'm moving toward something I WANT instead of simply responding to whatever life throws at me next.

I'm not a full-time writer yet. Who am I kidding? I'm still working on figuring out how to make that happen! But I'm headed in that direction. And after fifteen years, that feels pretty incredible.

I know there are parents and caregivers reading this who are still deep in those weeds. Some of you are managing medical appointments, therapies, diagnoses, financial struggles, sleepless nights, and daily crises that leave absolutely no room to think about your own dreams. Some of you may not even remember what those dreams were. And I won't pretend that there's a simple solution. I certainly didn't find one.

But I want you to know that you are allowed to be more than the responsibilities you carry. You can love your children fiercely and still want something that's just for you. You can be devoted to your family and still have ambitions of your own. You can be a caregiver AND an artist, an athlete, a writer, a scientist, an entrepreneur, or whatever else you dream of becoming. And maybe your opportunity to pursue those dreams hasn't arrived yet.

Maybe you're still trying to keep your head above water. I understand that more than you know. But I hope that someday you'll be able to lift your head high enough to see that island. Because I spent fifteen years believing it was too far away. And now I'm finally swimming toward it.

So let me ask you something. What part of yourself have you had to put aside while taking care of everyone else?

I'd love to hear about it. Maybe we can help each other remember that there's more to our stories than the chapters we're living right now.