Mother’s Day: Holding Onto Our Identity
Happy Mother’s Day to all you incredible moms. This month, I want to talk about something that runs deep for so many of us: how motherhood—especially when you’re raising a child with a rare disease—reshapes our identity.
Our journey is unique and emotional, filled with fierce love, deep exhaustion, relentless advocacy, and quiet moments of courage. But while we pour ourselves into our children’s care, it’s easy to lose touch with who we are outside of that role. Who were we before the diagnosis? Who are we now? And how do we hold on to ourselves in the midst of it all—our passions, our goals, our spark?
This is about identity: how it shifts, how it survives, and how we can stay connected to the parts of us that make us who we are—not just as caregivers, but as whole human beings.
The Emotional Journey of Motherhood with a Rare Disease
Motherhood in the rare disease world is a constant push and pull. One day, you’re celebrating a tiny victory—a successful therapy session, a night of uninterrupted sleep. The next, you’re up at 2 a.m. googling symptoms, wondering if you’ve missed something crucial.
It’s beautiful, and it can be brutal. There’s so much love—but also so much responsibility. We throw our time, energy, and heart into caregiving, often at the expense of our own needs and desires. Studies even call this “role overload”—where our own dreams and goals get shoved aside.
That’s where identity often gets lost. When you’re pouring everything into your child’s survival, it’s easy to lose yourself. But still—you matter too.
The Invisible Shift
For many of us, identity shifts quietly. One day you look in the mirror and think: Where did I go?
Maybe you used to be a runner, a writer, a planner, an artist, or the one who organized game nights. Now, you’re the advocate, the caregiver, the organizer of medical records and appointments. “Rare mom” becomes your name, your role, your mission.
This shift is real. And we’re allowed to name it, miss the parts of ourselves that feel on pause, and want more of ourselves in the journey. Just as our child’s needs are valid, so are ours.
Simple Ways to Reclaim Yourself
Bring Yourself to the Journey
Your strengths and passions are not separate from motherhood—they’re tools for it.
- A love of organization might help you track meds and appointments.
- A creative streak can be channeled into advocacy or awareness campaigns.
- Teaching skills can be used to homeschool around therapies.
These gifts keep you grounded and allow you to bring you into the caregiving role.
For me, writing became my outlet—using creativity as a way to stay connected to myself while helping other rare mamas.
Carve Out Small Increments of Time
It doesn’t have to be all or nothing. Even 15 minutes a day to journal, run, or paint can lower stress and reconnect you to yourself.
Maybe it looks different now: a yoga class once a week instead of daily practice, or a walk around the block instead of long runs. Small, consistent moments can be deeply restorative.
Try this: before bed, write down one thing you’re good at and one thing you love. Brainstorm a small way to weave that into tomorrow.
Find New Ways to Connect with Passions
If old hobbies feel out of reach, adapt them.
- Love music but can’t get to concerts? Curate playlists for calm-down time.
- Loved gardening but no longer have a yard? Grow herbs on your windowsill.
- Used to paint? Try a quick watercolor while your child naps.
Your passions aren’t gone—they’re waiting for new forms.
When Identity Evolves
Sometimes it’s not about “getting back” to who we were. We’ve changed. Our identities are growing, integrating old and new.
You might not travel like you used to—but maybe you’ve found wonder in the smallest details. You may not dance in clubs anymore—but you hum lullabies with tenderness you never had before.
Identity doesn’t vanish—it evolves.
The Power of Becoming
We often focus on what we’ve lost. But what if we also got curious about who we’re becoming?
Every day, in small moments—when you advocate fiercely, when you choose to laugh, when you allow yourself to rest—you are becoming.
And you have a say in it. You get to choose your values, your softness, your strength. You get to honor who you were while welcoming who you are still unfolding into.
This Mother’s Day, ask yourself: Who am I becoming? Let that vision guide you.
A Personal Note
Before my son’s rare diagnosis, improv, acting, and advertising were a big part of my identity. I left them behind, but they evolved into something new: writing and creating Rare Mamas. That spark is still alive—just transformed.
And recently, a rare mom friend sent me a photo of her first watercolor in years. “It wasn’t perfect,” she said, “but it felt like mine.” That’s what reclaiming yourself looks like. Messy. Imperfect. Yours.
A Mother’s Day Reminder
This Mother’s Day, celebrate not only your motherhood but also you. The woman still in there—fighting, dreaming, growing.
You are not just the keeper of medications and emergency plans. You are not just a warrior (though yes, you are that too). You are a whole human being—with passions, gifts, and a name that is yours.
You matter.
You are loved.
And you are still in there.
Happy Mother’s Day, radiant Rare Mama.
To listen to this podcast episode, check out Rare Mamas Rising Mother’s Day Episode; Holding Onto Our Identity
