A woman terminated her pregnancy because her baby was diagnosed with Down syndrome, she believed she was doing the merciful thing, preventing her son from suffering due to his diagnosis. She grieved for her baby and held a funeral for him. I believe she was terrified of the diagnosis. I wish she had known the love and joy her child would have brought to her family. I wish that boy would have had a chance of living and loving life. But fear has a way of covering our hearts with its thick fog, making our thoughts and feelings irrational, and dark, and damp. The truth is, suffering is a universal human experience, it is not dependent on a diagnosis.
We are all broken people living in a broken world. None of us are exempt from suffering.
When someone’s choices pierce our hearts, and our sadness is a bleeding wound that seems to never heal – we suffer.
When a job is lost and we wonder how we will provide for our family’s needs – we suffer.
When relationships crash and break into a million irreparable pieces – we suffer.
When sickness pulls us under the surface of health – we suffer.
When mental health illness shows up at our door – we suffer.
And our television screens yell, and wail, and moan over the incredible suffering that plagues this fallen world. And our hearts crack under the pressure of such weight.
Thankfully, we have a God who is present in our lives, who walks with us, and shares in our suffering, offering us peace.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Isaiah 43:2 NIV
If suffering was all there was to life, what a miserable and sad human experience that would be. Thankfully, our human experience is marked by moments of unconstrained joy, the comfort of heartfelt laughter, and often large measures of love. There is family, and peace, and the reassurance of a home where there is unconditional acceptance, where we are valued and celebrated.
No diagnosis can measure the amount of joy, happiness, accomplishments, talents, gifts, or love a person will have.
In this life, we will have trouble, there is no way around it. Yet for all the trouble there is so much goodness, there is so much light that covers that darkness.
The goodness of life outweighs the trials.
All life is precious, all life has value, all life has a purpose.
It pains me to hear stories like the one I mentioned before, because I know that choice was made in fear, and based on ignorance. I know I was terrified when I had to deal with my daughter’s diagnosis of Down syndrome, but the truth is, I had no idea what our life would be like. How could I ever know what the future would hold? I imagined it would be hard, and sad, and perhaps a life of increased suffering for her, for us. Instead, life has been good, so good. And so rich, because she is in our lives.
So make no mistake, my daughter with Down syndrome does not suffer from her diagnosis. She is seven years old, and right now she mainly suffers from not being able to play with her sister’s toys. She frustrates us with her stubbornness and she has to have things her way. She yells at us if we are too loud because according to her she is the only one allowed to crank up the volume. She feels deeply, she dreams big, and is exuberant about life. She celebrates us, includes us, makes us feel like VIPs. Her presence in our lives is a gift. She ambushed us with love.
I don’t know where the idea came that people with Down syndrome suffer, I suppose it is a result of previous generations when people with Down syndrome and other disabilities were institutionalized and considered unable to learn or thrive. I have seen documentaries and news reports of other countries where this continues to be a practice. We adopted one of our daughters from an Eastern European orphanage, and I have seen the condition in which the children with disabilities live. Yes, adults and children in institutions like these do suffer, it is a terrible, terrible way to live. Thankfully, a generation ago, brave parents decided no more, they kept their babies and began to raise them in their homes. Now people with Down syndrome are defying stereotypes, challenging misconceptions, pursuing dreams, exploring their gifts and talents, living and loving life.
People don’t “suffer” from Down syndrome. In a study conducted by Brian Skotko, 99% of adults with Down syndrome reported they were happy with their lives. How many “normal” individuals can say that?
Suffering happens, it happens in life. But human experience is about so much more than suffering. Disability is a part of life, and where there are extra challenges, it does not mean that the goodness of life will not show up. It does not mean that love, and joy, and peace, and value, and a meaningful life will not be experienced.
People with Down syndrome do not suffer from their diagnosis, they live life to the best of their ability, to their fullest, the same way you and I try to live our lives.