Don’t feel sorry for me; I’m happier than I’ve ever been.
A few months back I was wrapping up a meeting with a potential client, when the topic of children came up. I mentioned the blog and its title (“clever,” she said) and how it became even more apt when I learned of Aisha’s Down Syndrome diagnosis.
Her brow furrowed in concern and she reached out to touch my arm.
“Oh, your daughter has Down’s? I’m so sorry…”
“Uh….what? Huh. No, there’s no need to be sorry – my daughter’s fine,” I sputtered.
“But I thought you said she had Down’s,” the woman persisted.
“No, what I said is that she has Down Syndrome, that she’s just fine, and there’s no reason at all for you to be sorry.”
“Oh. Okay,” came the feeble reply.
I never got her business.
No doubt I’m not the first mother (nor the last, sadly) to have this reaction to my kid’s diagnosis, but anyone who’s seen our instagram page or even reads this blog know that when it comes to my daughter, there isn’t a single fecking thing for anyone to be sorry for. She’s your typical two-year-old hurricane, full of energy and wonder. Her diagnosis is just a part of who she is, but it certainly doesn’t define her.
I’m happy to see the amount of positive media and social attention being given to persons with Down Syndrome. I’m always so thrilled when my friends share links (of their own accord) and reference articles and videos of people who share my daughter’s diagnosis doing wonderful, progressive – dare I say normal things. It gives me some relief to know that she was born in a time where attitudes toward people with physical and intellectual differences are changing by leaps and bounds; she and her extra-chromie homies (lol) are being seen as people first. People who can be productive and successful, who live meaningful, interesting and enriched lives.
And then, when I talk to medical professionals who make dire predictions, or have encounters like the one with the aforementioned woman, I realize that there’s still so much ground to cover. Still so many perspectives stuck in the days where my girl might have been labelled terrible, awful things; institutionalized and left to live a lonely/neglected life, tethered to a bed and fed but once a day.
The thought brings angry tears to my eyes.
I’ll admit to worrying every day about the life that lies ahead for Aisha, and who will look after her when I’m long gone. But as I watch her thrive and flourish with every passing day – as she meets her age-assigned milestones and shatters expectations – I realize that this kid is indeed just fine.
* * *
That woman will never meet my rough ‘n’ tumble little bean, with her mischievous grin and copycat ways. There will never be any deep-with-baby conversations, her babble punctuated by English and Portuguese words – with sign language thrown in for good measure. She will never have the privilege of receiving one of Aisha’s heart-meltingly adorable hugs.
Come to think of it, she should be sorry.
She’s missing out on a whole lot of awesome.