Surprised by Down Syndrome
If you’ve been following our story for long, you know that when our oldest daughter was a handful of months old, we received confirmation that Down Syndrome was a part of the story that God – before the beginning of time – had written for her…and for our family.
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While God chose for this news to somewhat slowly be revealed to us, in the end, we were indeed surprised by Down Syndrome. Along the way, however, it hasn’t just been the diagnosis that came as a surprise to us. Over the past couple of years, our family has come face-to-face with a few other surprises – some difficult – and some beautiful.
Surprised by Down Syndrome
Surprise #1 – For a variety of different reasons, we have been surprised by some of the interactions we have had with others. At the announcement of our news, most were incredibly kind and supportive, but then there were some who surprised us with: anger as to why the hospital staff hadn’t noticed anything after she was born, anger as to why the pediatrician hadn’t spotted it sooner, announcements as to when they themselves first noticed something, comments and questions that rolled off their tongue without a thought but that stung in ways I will probably never speak of out loud.
[Especially if you are new to walking this same path we are on] It would be dishonest to not admit to you that hurtful words have been spoken, but for the handful of self-proclaimed child-development experts and well-meaning individuals who just.didn’t.think. before they spoke, we have been completely overwhelmed with kindness and support in ways too numerous to list.
In the earliest moments of our experience, not only did we immediately feel the hands of our Father around us (and when I say immediately, I mean immediately), but it was no time before: my parents showed up on our doorstep…and former students started mailing me Scripture-laden cards…and friends left home-cooked meals at our front door…and someone who knew how I was feeling met me coffee…and a kind woman at church looked me dead in the eye and said, She’s beautiful. She meant it. I knew she did.
Surprised by a handful of hurtful comments? Sure. But overwhelmed with kindness from others? Absolutely.
Surprise #2 – For some reason, I feel like I expected strangers to be impatient and unkind toward us, and while I realize our story is just getting started, I must say that one of the sweetest surprises thus far has been strangers being so kind to our family. Shame on me for being so shocked by this. The response Aubrey receives when she waves and smiles at strangers? It is clear that she has a gift that I look forward to watching her share throughout her life.
Moral of the Story: I want to be like her when I grow up.
Surprise #3 – In those early days, as we began to be introduced to others within the Down Syndrome Community, we were saddened to see that not everyone shares our desire to celebrate life. As we sought to educate ourselves about our new calling, we felt punched in the gut when we realized that the Down Syndrome Abortion Rate in the United States is somewhere between 83%-87% – depending on which source you cite – and as we were connected with pillars of the Special Needs Community, we quickly realized that many of the individuals who call themselves advocates are more passionate about educating families about their options than they are encouraging families to celebrate God’s design – no matter what that might look like.
Yes, it would be unfair to pretend like a diagnosis for your child isn’t scary, and it would be lacking in compassion to not acknowledge that many families are facing difficult situations that can leave them feeling overwhelmed, but as Christ-followers, God gifts us with the ability to view life through a lens that recognizes His hand in each chapter of our story – and not just on the easy pages of life’s book – but if we are honest, a hand that is even more evident throughout the most difficult paragraphs of our journey.
Surprise #4 – God has given us so many reasons to celebrate! We have felt Him at every turn gifting us with the ability to choose joy and live with enthusiasm over each new milestone! Thank you, Father, for eyes to see the beauty of your perfect design. You have gifted us with so many special moments – and we are grateful for every single of our them.
Our Family’s Passion
Our prayer for each of our children is that their lives would be used to point others to Jesus. It can feel so scary to release our kids back to the Creator in this way, but it is also very freeing.
God, they are yours. May you use each of their stories to draw others to Yourself.
In short, our heart is not to dedicate our time to raising awareness about Down Syndrome or pleading for acceptance in the community-at-large – or depleting our energy fighting for funds or rights or entitlements that are part of failing systems. Our desire as parents is for Aubrey’s life to point to a Master Designer whose heart for each of us is beyond all human understanding.
Whether you are an old friend or new to this space, thank you for celebrating life with us!