Tonight I reintroduced the word #microtia to Landon. Since she was little, we’ve casually talked about Treacher Collins and Microtia, having one of a thousand conversations rather than one big one.
I remember hearing the word myself, a little over seven years ago. I tried to google it and couldn’t find it- having spelled it wrong. When I finally found it, I didn’t undertand what it would mean. Would she hear? How? Would she be okay? How? What do I need to do to help her? And how? Little did I know that NYC would be the ultimate gift with its free services courtesy of a wonderfully functional Early Intervention program and the introduction to the Clark School and Meredith Berger. I had no idea how rare this place and the EI program was until I moved to the south.
Having found our footing amongst some of the greatest teachers, Microtia slowly became just one part of our identity. This is the gift of awareness, of advocacy. Of parents and teachers and therapists sharing their gifts with her from birth. We received information, choices, and services, thus allowing Landon to grow up with everything she should.
Tonight, after describing Microtia again, I asked her… “what do you think about your ears, and what would you say to a girl younger than you who was lucky enough to have ears like yours?” She smiled and said “they’re cute, my ears are so tiny and cute. And I really like my bahas, they give me super hearing, like Super Girl.”
For all of the families who make the overwhelmingly marvelous discovery that their child has Microtia, I hope you hear these words as you navigate the myriad of doctors and therapy appointments. I hope you know what you should expect from government programs and fight for anything you’re missing. I hope you can see the gift that is our community of fierce fighters and super girls and boys. As you find pride in them, they will find it within themselves.
#microtiaatresiaawareness #microtia #nationalmicrotiaawarenessday #treachercollins #wonder #choosekind