To the Moms Who Parent Kids With Rare Disease

On this Mother’s Day weekend, here’s a tribute to those who parent children with rare disease.

I see you.

I see you seizing each day, filling moments with love and laughter.

I see you advocating for research funding, putting your passion into action.

I see you studying these conditions you didn’t even know existed as your eyes fill with worry.

I see you raising money and awareness for rare diseases, while staring at an endless pile of medical bills.

I see you navigating challenge after challenge only to wonder “what’s next?”

I see you holding up your armor to save everyone in your path, sometimes at your own peril.

I see that you’re tired. Scared. Confused. Angry. Lonely. Happy. Sad. Grateful. Did I mention tired?

I see you because I am you. You are not alone.

And today, I challenge us to rest. Let us celebrate our ability to do all of the above with apparent super powers. For today, let’s put down the armor, drop our shoulders, and embrace more being, less doing.

I challenge us to think less about “what’s next” and more about “what’s right now.” Be present in this day, in this moment. Let’s point our faces to the sun and take a deep breath. And another. And another.

I beg us to tell ourselves every single day that like our children, we too, are rare. Like our children, we too are strong, brave, determined, and resilient. Like our children, we do not walk this path alone.

I see you.