Remembering Josselyn: Special needs, medical interventions and...the ugly world of lingering stigma's

[This article and associated views, thoughts and ideas are my own]

Last August, I shared a post about Lian and Ella, two of our little ones that my wife Cady and I adopted. It was a very exciting moment, with their picture displayed on two jumbotrons in Times Square. I shared a bit of our personal story around adoption, children with special needs and medical complications. That was the bright, rosy view of adoption, Down syndrome and the oft times overlooked world we live in.

This past week, we learned that one of Ella's classmates, Josselyn Hernández, was fatally hit by a car , as she played in her front yard. She was 6 years old, and like Ella, she had Down syndrome. It was a crushing and heartbreaking moment for all of us when we learned of her untimely passing, but that is not why I'm writing this.

In this obscure corner of the adoption and Down syndrome community, we are always fighting for our kids. Many of us deal with significant medical and adoption related trauma. Both Lian and Ella were born with heart defects. Ella had major open-heart surgery as a baby to repair her terribly broken heart, but today, they are both thriving, healthy, energetic and full of life! I'm thankful to the Lord for the laughter (and mischievousness) that they both share with us. It's also why I'm in the industry I am in... because one day, she might need that not-yet released treatment that could save her life...again. She will likely need additional repairs down the road as she grows, and those in my industry circle know the work we're (collectively) doing to ensure we have safe and effective treatments. It's an amazing time to be part of something incredible, even with our warts and all. Alas, that's not why I'm writing this.

"I'm not sure why this investigation is taking more than 5 minutes, it wasn't my fault, no one was watching her and she jumped out in front of me. That retard."

I mentioned that we fight for our kids on an almost daily basis. We fight for them to be seen and accepted. They are incredibly special and will change your heart in ways that you never imagined. We fight against misconceptions, bias and what we "think" should be the "norm". And yet, our kids thrive and do life and get jobs and become productive members of society. This is why I write this. I was dumbfounded, and angry, but then incredibly sad when I read the words of the man who killed Josselyn. Not only did he not have empathy for the little girl that he killed, but he completely devalued her life with one word, based upon her disability. You might ask "how could he say something like that?!", but unfortunately, it is way more common than you might think.

I remember when we first brought Lian home from China in 2016. Lots of sideways glances (still get them), off-hand comments were common, but one instance has never left me. Cady was out shopping with Lian one day. A man approached her, looked at Lian, looked back at my wife (you know, because they look nothing alike ??) and said "Either he is adopted, or you found him in a Chinese take-out bag". He laughed and walked away. This was shocking to us at the time, but since then, and unfortunately, we've become calloused to the looks, the whispers, and we're maybe a bit more jaded (ok, a lot), but our love and fierce protection of those that are defenseless has only grown.

In our industry of clinical trials, novel treatments and the next breakthrough, some of us are working directly with patients, or maybe we're providing tools and platforms for Investigators, sites and other partners. Our work requires true empathy, strong communication and an ear to listen. We take great care to ensure safety, privacy and security abound for all those involved. But what happens when we step outside of "work" and we cross paths with those that might look different, sound different, or act in a way that doesn't fit the "box" we put people in? Those very same people have families that are quietly fighting for them. They are in and out of treatment, surgery, doctor appointments galore, and some are participating in clinical trials in hopes of finding something to help the person that they love and desire to see thrive.

As you step out today, carry that empathy forward to those directly around you and see that special someone as having value in God's eyes, and as someone who will show you love, and how to love, more than you ever imagined.

-Chris Driver