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Da 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. 

Nei primi giorni dopo la diagnosi, c'erano così tante parole da capire di nuovo. Ho imparato che "bisogni speciali" era un termine obsoleto per molti, ma che bisognava rispettare chi si identificava ancora in quel modo. Ho capito che "disabilità" non era una brutta parola e che a volte era addirittura preferita a "diversamente abile". E sapevo che non mi piaceva che la parola "difetto" fosse pronunciata dopo la parola "nascita". 

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. 

Quando mi guardo allo specchio ora, ancora stanca e convivente con l'incertezza, vedo una mamma rara.

Quando mi guardo allo specchio, ora, ancora stanca e convivente con l'incertezza, vedo una mamma rara. Ha le spalle indietro. È sfidante, con grinta e dolore. Lei e la diagnosi di suo figlio sono rare. Sono pochi e lontani tra loro, fuori dall'ordinario, straordinari, forse addirittura eccezionali. Mi allontano dalla mia riflessione sapendo che le parole che uso per definire me stessa e mio figlio influenzano il modo in cui si svolgono le nostre rare storie di vita.  

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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Ultime notizie da Know Rare