by Laura Will

This is why I call myself a rare mom:

It started with a strange moment, a couple of weeks after receiving my son’s rare diagnosis, when I looked in the mirror and barely recognized myself. I did not have the diction to define myself. I had been told that motherhood rewires the brain, and I was finding out that grief does too. The reflection gazing back at me was tired, aching with uncertainty, and feeling quite alone. I scowled, thinking this must be what the ‘special needs mom’ version of me looks like. Then, turning away from myself and the image mocking me, I let out a brief sob before returning to the work of childcare. 

In the early days post-diagnosis, there were so many words to understand anew. I learned that ‘special needs’ was an outdated term to many, but to respect those who still identified that way. It became clear that disability was not a bad word, and was sometimes even preferred to ‘differently-abled.’ And, I knew that I did not like the word ‘defect’ to be said after the word ‘birth.’ 

Defects are inherently bad, flawed, imperfect. I could look at my son and see him as defective, or I could look at my son and call him rare. I chose rare. And sure, he is imperfect, like most humans I know and love. I now like to think of him as ‘perfectly imperfect.’ While others use words like ‘congenital brain malformation’ or ‘developmental delay’ on discharge paperwork and health insurance claims - we can reframe it all as ‘rare.’ ‘Rare’ is an extraordinary word. Rare’s definition includes the isolation and atypical while also acknowledging the awesome singularity that exists within each rare story. 

When I look in the mirror now, still tired and living with uncertainty, I see a rare mom.

When I look in the mirror now, still tired and living with uncertainty, I see a rare mom. She has her shoulders back. She is defiant, with grit and grief. She, and her son’s diagnosis, are rare. They are few and far between, out of the ordinary, extraordinary, perhaps even exceptional. I turn away from my reflection knowing that the words I use to define myself and my child influence how our rare life stories unfold.  

As our story develops, so are hundreds of thousands of other rare stories. As though we are all rare stars in the night sky, there are contiguous constellations of rare. We are connected through advocacy and experience, through emotion and insights. There is a community out here that can see my rare-mom life and know it deeply. So to all you one-in-a-million, perfectly imperfect stars out there: choose your words carefully. Join us; we choose rare. 

Happy Rare Disease Day!