March 21 is Word Down Syndrome Day. It’s a day to raise awareness of the vital contributions people with Down syndrome make.
On multiple occassions, I’ve written of what our daughter, Ella, has taught me:
But today I want to reflect on another lesson.
A Reflection on World Down Syndrome Day
You know a lot. You are smart. You have learned through education and experience. You have common sense and home-spun wisdom.
There are some topics which everyone turns to you for the right information. You are an expert in your field of study. You are the ultimate guide to your children and close friends. While you may not always do what is right, you generally know what is right.
But there is one thing you do not know.
You do not always know what is best for you.
You think you do. Most of the time you are probably right. But sometimes you don’t have a clue.
On occasions, the last road you would ever choose is the best road for you.
So it often is with a diagnosis of Down syndrome.
No one hopes their child is born with Down syndrome. The news should not be delivered with great joy. While I appreciate most of what Noah’s Dad recommends in his letter to pediatricians, I disagree with one point. I do think it’s okay to express condolences, to say “I’m sorry.” Life doesn’t always go as we want and it is okay to feel sorrow in it. (See: It’s Okay to Laugh and Cry)
While the diagnosis of Down syndrome is not one which anyone would choose, it does bring with it many positives. It does lead to a life which few regret.
In the hours following the birth of our daughter, our pediatrician delivered the news of the diagnosis. After the doctor left the room, Jenny’s first words to me were, “Well, I would’ve never chosen this road.” I quietly said, “Nope.” But she continued, “But we will never regret going down it.”
She was right. No one ever regrets going down it.
Yet some people never travel the road because of fear. When a pre-natal diagnosis of Down syndrome is given, they wrongly assume they can’t or don’t want to travel that road, so they abort. It is a tragic mistake. (See: Children, Disability, and Abortion)
Not only does it rob a person of their life, but it also robs society of someone who can make great contributions and it robs the parent of what could be one of the most meaningful experiences of their lives.
All of this because of fear. All because people think they know what is best for them. Many times we do. Sometimes we don’t.
On occasion what we think would be the worst thing for us actually turns out to be the best.
While we shouldn’t willfully choose what we think might be the wrong road, we should be open to travel unknown roads when they are chosen for us.
A diagnosis of Down syndrome is not something any of us can create. It happens beyond our control. When it happens, while it is okay to experience sadness, we should also be quick to embrace the unknown. When the road is chosen for us, we should walk it with anticipation. (See: Improv, Denial, and the Will of God)
Parenting a child with special needs is not an easy task. These past nine years have had many challenges. Contrary to popular belief, “special” children are not given to special parents. They aren’t angels and neither are we.
But parenting a special needs child does bring with it unique gifts. Lessons are learned, insights are gained, and graces are experienced which few others can know.
It’s interesting that the road of Down syndrome is one no one would choose, but I’ve never experienced a single parent who regrets having traveled it.
The lesson is simple—we don’t always know what is best. It is arrogant for us to believe otherwise.
Because we don’t know what is best, there are some things we should humbly accept within our lives. A child with Down syndrome is one of those things.
For more, see: