The first time I read the article, The Last Children of Down Syndrome, I had the same visceral gut reaction as many others who may have just skimmed over it, “What?? Don’t the people of Denmark know the blessings that people with Down Syndrome bring into your life? I will need to educate them.” The second reading, I was less emotional and more impressed with the depth of the journalism in covering a sensitive subject. By the third reading and after talking to several people close to me, I had my “aha” moment. This story is not about a few parents in Denmark having to make a heart-rending choice. It is the cover story in The Atlantic Magazine, in December of 2020, because it is a metaphor, a much deeper “story” that affects every single one us and how we respond to choices, choices that everyone of us will or have faced. It is not a story targeted at a small select group of parents, it is aimed at the heart of every single one of us, who, perhaps, have faced one of the most difficult years of our lives. It has been a year that has disturbed our foundations and made us realize what things really are important. With that realization, my response comes from a much different place, a deeper place. It is a subject that after 60 years of living, I am only beginning to understand myself, but still, I can speak confidently about.
Unlike most of the families interviewed in this article, my son, Andy, was born before genetic testing was the norm. I was not faced with any “choice” to make while I was pregnant. I was 24 years old, prime child bearing age. I learned of Andy’s condition about an hour after his birth, when my husband came into my room holding our first born son in his arms and told me that the Dr. said he had “Down Syndrome.” Any “choice” as to whether to continue the pregnancy had left the gate. I still remember my words, as my eyes welled up with tears. “Who cares, we will take him home and love him like the rest.” Because whether to take him home was not really a choice either, I had nursed him, I had bonded to him, he was mine. As far as the “choice” as to whether to keep him, that ship had sailed too, even though some parents were still given an option of institutionalized care at the time. A nurse came in my room and spoke of a genetic anomaly—whatever the hell that meant—and told me that these kids could dance and knit like no other. With that helpful advice packed in my diaper bag with a sample can of baby formula, I wrapped him in a blue blanket and headed home. At home, I had an almost three-year-old, a one year old and a birthday party waiting to greet me. I didn’t have any time to ponder what his disability would mean. I had very little time to grieve or even sleep. I was too busy taking care of three babies. It has pretty much been the same for the past 36 years. More siblings eventually arrived and Andy just blended into the love and chaos. We were The Down family. We stood out and we stood up for each other. We all had Down Syndrome to some degree or another. Although, Andy is quick to remind all of us, that he is the only one with the secret line across his palms, a Simian Crease…common to most people with Down Syndrome. In an argument he would always raise his hand, to show he was the one with the true secret superpower.
Over the years, imperceptibly, Andy changed us, he defined us. If you ask any one of my children they will tell you that having Andy as a brother, helped make them who they are. All of my children are kind and caring and look out for each other and for those who may be the underdog. I am now seeing these same traits in my grandchildren as they look out for their “Uncle Andy” as he looks out for them. They are who they are because of the homes they have been raised in. We would not be the same family or the same people without him. He has made us better. Did I know any of this in that hospital room on that cold, dark January day, so many years ago? Of course not! We are never given the luxury of seeing the end from the beginning in this adventure we call life. We see through a glass darkly. Most of the time we just muddle through. The Universe has a sense of humor, sometimes a twisted sense of humor. We know, we are the Down family!!
This is the dilemma, the dilemma laid out in the magazine article. What are we supposed to do today, when we don’t know what tomorrow brings? How do we make life altering choices with very little information? In the case of Down Syndrome, the primary information that expectant parents are given comes from Doctors who have very little real life experience in such matters. So what are we to do when faced with decisions, decisions with real, life changing consequences. I know now what you do…you roll with it, you muddle through, even if all the info you are given is “hey, they can really knit…and dance.” And you alway choose love. And that is pretty much it my friends. It’s easy.
Fortunately, I learned this early from my Vacation Bible School teacher who sat with us in a circle, under a palm tree in Phoenix, strumming her guitar singing, “Everything is Beautiful…in it’s own way.” and “What the world needs now, is love sweet love,” as a bunch of nine year olds swayed to the music. The hippie generation I was born into have really screwed some things up, but the main message that my generation was sent to share has withstood the tests of time. In the words of our modern day apostles, John and Paul…Love is all there is.
Love, love, love Love, love, love Love, love, love There is nothing you can know that isn't known Nothing you can see that isn't shown There's nowhere you can be that isn't where you're meant to be It's easy All you need is love All you need is love All you need is love, love Love is all you need!
When asked about this song, later, John and Paul said “it was inspired and we didn’t want the message to ever get lost, ever.” Love is all you need.
And you can look to the the other modern prophets too…the words of the prophets written on the subway walls. They all say the same thing….Rumi said it….”“The wound is the place where the Light enters you.” Joseph Campbell said it, ““The cave you fear to enter holds the treasure you seek.” And Leonard Cohen said it in another way. “There is a crack in everything, that’s how the light gets in.” So when you are “wounded” or “cracked” or find yourself in a dark cave…as all of us will—you wait and the light will get in…it always does. Always!
Thinking that we are going to have some Utopian society without disabilities, without illness, without poverty, without challenges, without viruses, is the Brave New World that none of us want to live in…for it would be very dark indeed, with no cracks letting the light in. But Aldous Huxley already laid that out for us much more succinctly than I can. The Atlantic just stirred our memory and reminded us. Instead, we must once again come to terms that we will never know the end from the beginning, regardless of what a well-meaning nurse or doctor or teacher or politician tells us…that is not how it works. We must take what life gives us, wrap it up in a blanket, learn to roll with it, love fiercely, and then crank up the music and dance. Andy and my Yellow Submarine album taught me that!