Elijo Raro

Por 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. 

En los primeros días tras el diagnóstico, había muchas palabras que entender de nuevo. Aprendí que "necesidades especiales" era un término anticuado para muchos, pero que había que respetar a quienes seguían identificándose de ese modo. Quedó claro que discapacidad no era una mala palabra y que a veces incluso se prefería a "con capacidades diferentes". Y supe que no me gustaba que se dijera la palabra "defecto" después de "nacimiento". 

Defects are inherently bad, flawed, and 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. 

Cuando me miro en el espejo ahora, todavía cansada y viviendo con incertidumbre, veo a una madre poco común.

Cuando me miro en el espejo ahora, todavía cansada y viviendo con incertidumbre, veo a una madre poco común. Tiene los hombros hacia atrás. Es desafiante, con agallas y dolor. Ella, y el diagnóstico de su hijo, son raros. Son pocos y distantes entre sí, fuera de lo común, extraordinarios, quizás incluso excepcionales. Me alejo de mi reflejo sabiendo que las palabras que utilizo para definirme a mí misma y a mi hijo influyen en cómo se desarrollan nuestras raras historias vitales.  

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. 

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