Photo by Sara’s Photography

With the acceptance we’ve experienced, it’s still shocking how little people understand about Down Syndrome. There is a lot of misconception and confusion. And I’ll be the first to admit, we knew nothing initially and we’re still learning. But it’s so incredibly important to know how to discuss Down Syndrome, so I thought I’d share some insight from our journey so far.

I read recently that words – using the proper terms and tense when talking about Down Syndrome – are important. And it’s true. Most comments we’ve encountered from others are innocent and come from a place of little awareness. In fact, I can often sense the hesitation as they try to choose the rights words mid-conversation. There are some comments that immediately strike me hard and my protective nature revs into overdrive. Others, I’m not quite sure how to feel about just yet. Ultimately, my goal is to educate myself so that I can educate others.

First, I’ll level set this by being clear that every single person with Down Syndrome is an individual with different abilities. It’s not okay to say someone “is Down’s,” or to use the term “Down Syndrome baby,” for example. Instead, say someone “has Down Syndrome” or use the term “baby with Down Syndrome.” Semantics, I know – but these statements are not accurate, and making them opens the door for people with Down Syndrome to believe that they are defined by their condition. And they are not. They are NOT Down Syndrome. They HAVE Down Syndrome. We all have our own battles but it is imperative to us that Callan knows – and believes – that our conditions are NOT who we are.

Second, parents (regardless of age) have a 1 in 700 CHANCE – not risk – of having a baby with Down Syndrome. That word risk can be tricky. During my pregnancy, that terminology was used often and it has the innate ability to strike all levels of fear in a parent. RISK. I remember harping on that word while asking the universe how we even became that 1 in 700. The diagnosis didn’t fit what we thought our family would be. But with every accomplishment, full-body smile and giggle, this now-18 pounds of pure joy assures us that he is who he was meant to be, and that THIS – this is what our family should be. Someday we’ll tell Callan just how grateful we are that we weren’t the other 699. But for now, we’re busy showing him each and every day that he is enough.

Questions? Ask away! As I said, we’re still learning but I’m always willing to help spread clarity and understanding.

 

 

Photo by Sara’s Photography

Meet Callan. He’s 8 months old, wild and hilarious. He’s a little guy with A LOT of personality and even more to love. And our boy? He happens to have Trisomy 21 (T21), the most common form of Down Syndrome. We haven’t yet talked publicly about Callan’s condition because quite honestly, it’s not forefront of our minds. It’s just a part of our life – a beautiful part at that. We’ve spent 8 months solely focused on our boy and getting to know him for him. But October is Down Syndrome Awareness Month and what better time to share our story? It’s time we do our part on the path to inclusion and acceptance. And it’s time everyone gets a glimpse at the true gift our boy is.

We celebrate our boy and his accomplishments every single day. He may have to work extra hard but it’s all he knows and he does so without complaint. And he’s THRIVING. We owe that to his tenacity, our outlook and our village. We are raising him to be a good, kind human who knows he can do and be anything – because he can. Go to college? Absolutely. Have a job? Of course. Live on his own? Sure. Why not?? Why shouldn’t he? We have the same expectations for him as we do his brothers. We are committed to his development and are making it a point to foster his independence early on.

Full transparency: When we received Callan’s diagnosis, it rocked our world. There was a complex process of grief and acceptance that I think only parents in that situation can truly understand. Looking back, I know that needed to take place. When we first found out our odds were high, the words the midwife spoke on the phone shattered me and quite literally brought me to my knees. “BAD news,” she said forcefully, with an air of pity. At the time, the fear, the unknown, the worry was so incredibly tangible and debilitating while we worked through it all.

Fast forward to a year later. When I look at our boy, all I can think is BAD news?! I wish I could find that lady and teach her a thing or two about life, love and acceptance (we cut ties immediately). And while I’m at it, all of the other ‘specialists’ who advised us on more than a dozen occasions to proceed in a way that would mean this irreplaceable ray of light wouldn’t be here right now.

Our boy has already changed our lives for the better. And mark my words, he is going to change the world.