Today is World Down Syndrome Day. I’m reposting my remembrance of a beautiful soul who taught me so much about love, joy and God. May you be so fortunate to have someone like Mike in your life.
Many people who have never lived in the South wonder why I loved Alabama so much. In many ways, it was my favorite place of the places we’ve lived: Three hours from the sugar-sand beach, lush countrysides lined with mossy oaks, church potlucks with tables filled with pure yumminess, the last time I felt like I belonged in church community.
One of the people we loved at church had Down syndrome. Mike enjoyed Diet Cokes, loved his family and cheered ‘Roll Tide’ when football season started. He also loved babies. I remember him holding my youngest when he was born. He asked in his breathy, hope filled voice, “Maggie, can I hold your baby?” He held him so gently and just smiled. He always smiled, joked and laughed. I remember him lifting his arms and singing the hymns wholeheartedly during church services. He epitomized ‘wholehearted.’ He attended the children’s Sunday school classes. When the children performed their Christmas program each year, he sat on a regal chair with a crown on his head. He was Herod. He was the most joyful Herod I’d ever seen! The 4 1/2 years we lived in Montgomery, Mike incarnated the face of God to me.
When I learned that Mike died on Tuesday morning at age 52, I had just read an article about scientists who recently discovered how to ‘silence’ the chromosome causing Down syndrome in a petrie dish. While the breakthrough is in its infancy, debate has already started about the ethics of a ‘cure’ for the disorder. I figured that would be a no-brainer. Of course we want to cure any birth defect, don’t we? Then I read some of the comments and I began to understand the concern. “[I]t’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness — and what it means to be human” –JoNel Aleccia, NBC News.
Hmm. I hadn’t considered what ‘curing’ Down syndrome may do to personality of the individual and compassion to collective humanity. While everyone in the article would like to see the limitations and diseases common to Down syndrome eradicated, no one wants to see the beauty of heart that most who have it embody. It’s true. People treated Mike with compassion, patience and kindness. Because of his gentleness, the nurturing side of people expressed itself in protectiveness. I’m sure his family has some memories of people treating him unkindly as he grew up in the ’60s and ’70s; but from what I saw, Mike brought out the best in the rest of us. After reflecting some and crying much over Mike’s life and death, I read the daily headlines of horror in Egypt and the Middle East. I read articles about Congress’ inability to compromise with each other. I read articles about injustices, prejudices and hate crimes in our nation and abroad. Nursing a headache, I returned to Mike and dreamed that he ruled the world. Even if someone like Mike couldn’t be president or a congressman, think of how his view could transform how we treat each other in politics and how he could influence policy if more in power would spend some time in his world.
In his world, no one would hurry. Mike suffered from gout and ambled at his own pace. His sister said that in the past few years, he moved more slowly. He couldn’t keep pace with others, so we kept pace with him. Everyone would evaluate (not judge) others based on character traits instead of appearances, orientations or theological interpretations. Bullying wouldn’t exist. People would live protectively, tenderly, kindly with everyone else. I don’t know how answers to really tough questions and problems would solve themselves; but I do know there would be joy. Unabashed, unflappable, unbridled, innocent JOY!
Do I wish Down syndrome had a cure? I wish the limitations of life-expectancy and life skills had a cure. But, I wouldn’t want to sacrifice the heart, God’s heart, of someone with Down syndrome. I wish scientists could isolate the kindness gene in Down syndrome and create a vaccine for our mean-spirited selfishness that we consider ‘normal.’ I wish scientists could ‘silence’ the chromosome that causes us to be pigheaded and intolerant toward people different from us. I wish scientists could find the DNA that would explain why we would rather sentence someone to eternal hellfire than listen to the life story and understand the hell a person has already lived. More than anything, I wish we ‘normal’ people had a cure for what ails our hearts for which Down syndrome people seem to have immunity–putting our rightness over relationships, living with a cynicism and hardness toward people who believe differently than we do, forgetting how to play and enjoy the little moments in life–the sacredness of life.
So, as I say goodbye in my own way to Mike and his well-lived, well-loved life, may we all reflect on how to live kinder, gentler, slower-paced lives. Mike, I hope you entered the embrace of God the way you embraced the rest of us … fully. You lived valiantly and graciously. Thank you for teaching so many of us that physical limitations like Down syndrome cannot limit the Holy Spirit from working in our hearts and through our lives.
Who has taught you most about compassion toward others? Who would you want to ‘rule the world’?
Below is the link to the article I mentioned in this post.