Advice for Rare Parents

From one rare parent to another.

🧠 Trust your gut. Follow your intuition.

It may save your child’s life.

You know your child best. They need you to advocate on their behalf—with doctors, at school, and in the community.

If I had just accepted a doctor’s first opinion, our son would still be undiagnosed. If I hadn’t questioned deeper at school, he wouldn’t be receiving any of the support he now depends on.

The truth is: most professionals have limited—if any—experience with a child as unique as yours. Your questions might make people uncomfortable. Ask them anyway.

🔄 Change your paradigm.

This didn’t happen to you. This happened for you.

I know—it takes time to get there. But I believe our children were put on this earth for a purpose. And that purpose includes you.

You are meant to be their parent.
Even on the hardest days.
Especially on the hardest days.

🛤 Be prepared to be a trailblazer.

Unfortunately, you’re walking the path less traveled. There aren’t many people who’ve come before you with a roadmap for this world.

But here’s the powerful part:
You’re creating the map others will follow.

You are the change.
And everyone’s rare children depend on people like you to light the way.

🫶 Find your tribe.

You weren’t meant to do this alone.

Start with a Facebook group for your specific disorder or join an organization that advocates for rare families. And if one doesn’t exist? Create it.

Connection is essential. You’ll find the most helpful resources, insight, and emotional support from those who are living this, too.

🗣 Ask for what you need.

Don’t expect people to “just know.” Tell your friends and family what support actually looks like for you.

Sometimes well-meaning people will say things like “at least he can…” or “at least she’s not…” They’re trying to help—but those words might sting.

What you may really need is someone to sit next to you in the hard stuff. Someone to let you cry, drop off a meal, or take your other child for the afternoon. Say what you need. Let them love you better.

🧭 When in doubt, do the next right thing.

next right thing grand pabbie frozen 2 melissa white boyer

When one can see no future, all one can do is the next right thing. -Grand Pabbie, Frozen II

There will be days you feel completely overwhelmed. Days you don’t know what the next week—or even the next hour—should look like.

You don’t need to see the full road.
You just need to take one small step forward.

*When I first heard this song, I felt understood in a way I hadn’t expected. Rare parenting often feels like moving through the dark, and sometimes all we can do is take the next right step.

❤️ Final Thoughts

This journey is heavy. It’s emotional. It’s full of unknowns.
But it’s also purposeful.

You are not just surviving this—you’re reshaping what support looks like for children like yours.

And your voice, your instincts, and your advocacy?
They matter more than you know.

We are made from grit.

If this post hit home, I put together a short, real-world guide with the parts of my story I’ve never shared in full, plus the practical advice I wish I’d had on day one—clinic questions, school meeting checklists, and simple next steps.