On Rett Syndrome Awareness Day, I will always continue to share, educate, advocate, and raise awareness for our incredible children and adults living with Rett syndrome. But this year, I want to talk about the people behind awareness – the parents who had a future imagined for their child—and then, somewhere along the way, had to quietly grieve the future they thought they were going to have. And the siblings who grow up alongside this journey and a life that is often very different from their peers.

I see you.

I see the parents who learned a language they never expected to speak. The ones who became experts in therapies, medications, communication, equipment, appointments and advocacy—not because they wanted to, but because their child needed them to.

I see the parents who learned to celebrate things other parents might never have to think twice about.  The parents who celebrate the smallest victories because they know just how much those victories mean.

I see the parents who worry about the future while trying desperately to stay present.

I see the exhaustion that doesn’t always show. The grief that can exist alongside immense love. The endless advocating. The cancelled plans. The sleepless nights. The moments when you wonder how you’re going to keep doing it—and then you do.

I see the parents who sometimes feel incredibly alone, even when surrounded by people.

I see the parents whose friends move on. Whose families get busy. Whose invitations become fewer. Whose people stop asking, and support that once felt abundant slowly disappears.

There is a side of Rett syndrome that doesn’t typically make it into awareness posts.  The part where the hardest part isn’t the diagnosis, but where the diagnosis changes an entire family’s life.  It’s watching the world keep moving, while your family is living a completely different reality.

So today, yes—let’s raise awareness. Let’s talk about Rett syndrome. Let’s advocate for continued research, possible treatments, inclusion and a future filled with more possibilities.

But let’s also recognize the parents who cry when nobody is looking, while they love their child with a depth they never knew possible.  To the parents who have been fighting, adapting, loving, grieving, celebrating and showing up every single day.

I see the heartbreak you don’t always talk about.

I see the strength you don’t always feel.

I see the sacrifices.

I see the love. 💜

#RettSyndromeAwarenessDay #RettSyndrome #RettAwareness #RettParents #RettFamily #ISeeYou