There has been a lot of controversy surrounding an influencer’s announcement to terminate their pregnancy because of a Down Syndrome diagnosis. This is one of those issues that cause so many layers, sometimes conflicting, within me to be ignited.
As a bereaved mother of a son with a chromosomal abnormality, it is heartbreaking.
As an advocate protecting vulnerable populations, it is an outrage.
And yet I recognize that these decisions are often deeply personal and complex. Announcing it to the world, however, necessarily invites opinions. Attaching the reason for that decision to a beautiful population whose very worth is called into question is where the conversation diverges.
Though the intentions of the influencer cannot be truly known, a conversation has been created from which potential good may come. Families with children with Down Syndrome are taking to social media and sharing their experiences. It is their turn to engage a world that is finally listening.
Our children are valuable. They are significant. They are not suffering.
The suffering is not found in our children. It is found in a world that often does not recognize their value. The greatest tragedy is not a chromosomal difference. It is missing the opportunity to know and love someone because of it.
When my sweet boy, Wesley, was born I did not know what to expect. I was terrified. There are few people who experience being thrust from the only world they know into an unknown, foreign land in the amount of time it takes to hear a medical professional say, “There is a chromosomal abnormality.”
It is a seismic shift on every level. It is an injustice to minimize how frightening it is. But an even greater injustice is to not share what is found in this new world.
The citizens in the world of disabilities are resilient. They persevere. They bring joy and unconditional love.
When my son was here, I would lament how much we tried to make him more like us, when really, we needed to be more like him.
He never judged others. He didn’t care how much money you made or who you voted for or what kind of car you drove. If you existed, you deserved a hug. He knew no strangers. When he couldn’t crawl, he learned to roll. He would get around the entire house rolling, pivoting, then rolling some more. He never gave up. In fifty-five years, I have never met anyone with that much tenacity.
I was not born to be a mother of a child with disabilities. I rose to that occasion and in doing so, I discovered one of life’s best-kept secrets. Being the mother of a child with chromosomal abnormalities made me a better mother, wife, friend, daughter—not because of anything I was capable of or possessed. It was because my son was the hero. He was the strong one. He was the great teacher who showed me and everyone in his vicinity the goodness of which we are capable.
I often wondered if he was that way because he lacked part of that chromosome. I do know the capacity to love and be loved is not located on a chromosome. Having too little or too many, I believe, can actually increase that capacity and teach those lucky enough to witness their example to do the same.
After losing my son I have grieved him every moment of every day. I have also grieved no longer being an active member of the beautiful world. I was scared and hesitant when I first arrived, but it became a place I deeply loved and was so very proud to belong. I have had the honor of meeting other children like my Wesley and other heroic parents who became influencers in their own right.
My fear is this announcement has the potential to undo years of advocacy and enlightenment for which we have fought. My hope is this controversy opens the conversation by spotlighting our children not as burdens but as the blessings they are. May others see, know, appreciate, value, and love them. What a different world we might create if more people could discover the joy and privilege of loving a child who, though they may not have the typical number of chromosomes, belongs just as much.
