Down Syndrome: What the Doctors Didn’t Tell Us

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Kirsten Stafford as a newborn. Courtesy of Janet Stafford
The moment the doctor told my husband and I that he suspected our daughter had Down syndrome, I instantly felt all of our dreams shatter.

As I think back to the day that Kirsten was born, it’s easy to wish that I could have a do-over. The moment the doctor told my husband, Shawn, and I that he suspected our daughter had Down syndrome, I instantly felt all of our dreams shatter. How could this be?

Not once did we hear “congratulations.” Instead, the words we heard in that moment were full of doubt and disappointment. We were told of health concerns and a likely short life-expectancy. Ultimately, we were left with a hole in our heart for the future we thought was before us.

Down syndrome: A Wonderful Adventure

Looking back, I would never want to offer my thoughts and feelings from that moment – not to mention the words of the professionals surrounding us. I certainly wouldn’t want to share them with any other parent who has just received the same diagnosis for their child.

Sure, the doctors were right in that Kirsten would face some medical issues throughout her life. However, what they didn’t share with us was that we were embarking upon the greatest journey any parent could ever hope for. It has been a gift and an honor to advocate for Kirsten and all individuals with Down syndrome. I now know the true beauty and value of their lives.

Raising a child with Down syndrome has taught us to slow down and celebrate each and every milestone. As full of love and joy that Kirsten is, she is also quite strong willed. (I like to tell myself that one day this quality will serve her well.) She likes to remind us that, just as with any child, we are not the ones to dictate the timeline of her milestones.

I recall the day we made the decision to finally order a walker for Kirsten. She was nearing 3 years of age and wasn’t walking independently. In true Kirsten fashion, the day the walker arrived was the day she decided she was ready to walk on her own.

I also vividly remember the first time Kirsten colored on the walls of our home. Somehow, brought me to tears of joy. She is naughty in all the same ways as any other typical child. And that actually makes me proud. Down syndrome doesn’t define her.

Yes, Down syndrome impacts her life in many ways, but it isn’t the end-all. She is still a little girl. A little girl who loves to push limits with her parents. She’s a little girl who loves to remind the world to not limit her. A little girl who is a world changer.

What They Should Have Said

I wish I could go back in time and tell that doctor what I know now. If I could, perhaps he could have offered us a more insightful glimpse into our future. If it were up to me, the words would have gone something like this …

Congratulations! You are about to experience pure uninhibited love and joy like never before. Your other children will be more kind and thoughtful because of the gift they have in a sibling with Down syndrome. You have just become a part of an extremely supportive community, one that most parents only dream of having. And you will feel closer to your Creator every moment that you look into the eyes of this precious child of yours.

Once again, congratulations!

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