Can you have a diagnosis and not walk around every day with a label? The outside world isn’t “allowed” to talk about our daughter’s Down syndrome because it’s not supposed to matter. But it does matter. Who we trust with words like “Down’s” and “delayed” and “special” and any other ambiguous word choices that can be used both endearingly and as weapons matters a lot. Who we believe should treat her as a little girl first and who should first acknowledge her Down syndrome also matters a lot and is very specific to each relationship we make.
Up until about 2 days ago I was conflicted over World Down Syndrome Day and where we fit in. Each year at this time I feel forced to find our place so as not to disappoint our friends, dare our lack of participation be misinterpreted as a lack of pride in our Hope and all she has and will accomplish. But outside of the prenatal period when we were unabashedly encouraged on multiple occasions to terminate the pregnancy, we haven’t had to do much advocating. The state has come through with early intervention (EI) service eligibility. Insurance has come through with enough annual private therapy coverage to make up for EI’s systemic shortcomings. Our town has come through with a remarkable in-district preschool classroom. Our carefully selected doctors have treated Hope’s symptoms, not her diagnosis. Our favorite community mommy-and-me music teacher never flinched over Hope’s DS. And as far as anyone on the playground or in a restaurant having felt uncomfortable around our family, that’s just water under the bridge.
But am I jaded? Has the work of previous generations—inclusion, financial protection in adulthood, employment rights—already become so commonplace, at least in our U.S. region, that we’ve forgotten the history of the neglected and institutionalized, or presently those babies who are aborted before birth because of societal pressure? This blog exists to share our beautiful, ordinary life, but it’s flawed because those reading it already have hearts open enough to accept our story. How do we reach those who don’t want Hope, or the idea of Hope, in their communities?
Down syndrome was not a part of this mama’s life before meeting Hope. I’d met a boy’s younger brother in high school, a friend’s aunt, and a grocery bagger in town with Down syndrome. That’s it. This is an entirely new world that we’ve so completely absorbed it feels like we’ve had Down syndrome all along and therefore find it fairly unremarkable. We haven’t lost our identities to a diagnosis, or we have and I haven’t noticed. When love comes first, it’s easy to tune out the things that try to get in the way of what truly matters.
Two nights ago as I was falling asleep, redrafting this blog post over and over again in my head because something about the now-deleted pessimism and negativity over the mounting pressure to define ourselves in the context of World Down Syndrome Day just wasn’t sitting right, I realized that this is our day to express ourselves however loudly or quietly as we want. This is a day where we can take ownership of our voices and speak from our hearts, find courage where we might not otherwise have it, remember our abilities, and know that we don’t need to hide.
On this World Down Syndrome Day 2019, Hope will send all of her classmates home with a DS-themed cookie and we will identify with the DS community by wearing our T-shirts and reaching out on WordPress and Twitter, not to announce ourselves but to say thank you to those who paved the way for our beautiful daughter to learn and thrive, to be accepted and to succeed.
*In this house, we are patient. We celebrate the little things because they are the big things. We don’t judge a book by the cover. We love hard. We are thankful for each other. When we see someone struggle, we lend a hand. We learn to care deeply and also let go. Because in this house, we have Down syndrome and we know that having a little extra makes you down right perfect.