October is Down Syndrome Awareness Month. So guest blogger Ellen Stumbo chose to write this two part series to describe what it was like to learn her second child would live with Down syndrome. Today, Ellen shares her initial reaction.
Down Syndrome Awareness: A Different Road, Part 1
I stood in the middle of a vast clearing. The breeze was gentle as it stroked my face, and the air carried the sweet aroma of wild flowers. The sun delivered beautiful golden rays that pierced their way through cotton clouds and gently touched the horizon. There I was, eagerly waiting for the glorious moment when I would get to take my first step into the beautiful road that lay in front of me. The road that was full of everlasting rewards. A road that held so many of my dreams, my hopes, and my ambitions. One that promised so much joy, beauty, and love; it was inviting me to come, to enjoy, and to discover. The road of parenting.
The gate at the head of the road looked like it came from the land of fairies. Its arch covered with lavishing vines that entwined forming intricate patterns. Dozens of flowers decorated the gateway as it welcomed its travelers. Down the road, strong oak trees provided shade for parents to get their much-needed rest and gather their strength. There were rocking chairs scattered throughout the road occupied by women whose lips whispered lullabies to their sleepy little ones. Fathers beamed with pride as they carried their children and lifted them up over their shoulders for all to admire. As far as I could see, flowers of all sizes, shapes, and colors paved the way. Their delicate scent had made its way to the gate opening. The songs of birds were a perfect symphony that invited all to sing. I could hear cheers and applause as children reached milestones and continued to walk farther down the road, into toddlerhood, childhood, and adolescence.
I watched as other parents took their first steps. Some were clumsy, some were nervous, and some were anxious. Some parents were experienced, having walked this road before. Some giggled, some cried. The excitement and wonder of welcoming a new life was contagious. The babies that they held close and tight, had captured their hearts, and changed their lives forever.
I was next in line. My turn was finally here. I stood at the gate with full confidence, ready to take that first step. My eyes fixed on the road ahead. The anticipation hard to contain. My determination and desire were almost tangible…
A gentle tap on my shoulder.
I turned around and next to me stood God.
“Child,” He said softly, “This is not the road you will travel.”
I was startled, confused. He gently took me by the hand and led me to the opening of a different road. I had noticed other roads at the clearing, but I had not paid attention to any of them. These other roads were not often traveled; they seemed lonely and rough.
“This one is for you,” God said.
My heart sank. This was not what I was expecting; it was not part of the plan, my plan. For there, before me, stretched a dark and gloomy road. The path was covered with thick and deep mud. There were decaying trees along the side whose branches hung low and heavily over the trail. The gray air was murky and suffocating. Slimy vines hung like a heavy curtain ready to trap all those who dared travel by. I could only imagine what other horrible sights awaited in the distance, for I could only see so far.
“Lord,” I dared to say, full of fear and anguish, “I believe this is a mistake.”
He smiled, looked me tenderly in the eye and whispered, “Sweet child, I don’t make mistakes.”
With tears, I took the first step into the road labeled, “Down syndrome.” Soon my tears were flowing. The mud of the “characteristic physical features” was thick. It was hard to walk, hard to lift my feet. There were places where I thought I would get stuck, or that the mud would drag me down and swallow me altogether. All the low hanging branches were different medical and physical problems. I was not able to avoid the cardiac and GI branches; I had to work my way around them. The air of intellectual disability made it almost impossible to breath, its derogatory term “retarded” was noxious. And the vines, they were everywhere! They were all the comments, the doctors, the looks, the whispers, the endless questioning, and my own thoughts.
I glanced back. I wanted to look at those traveling the beautiful road I had longed to travel. The one I had chosen. I saw the smiling faces and the many people walking through the gate. Oh, the beautiful sight! But that was not where my feet were standing. Here I was, trapped in an ugly prison. I wanted to get out. I was not supposed to be here!
Did You Feel Like Ellen?
Did Ellen capture the emotions you felt when your child was diagnosed? What would you add to what she wrote? Leave a comment if you like, and come back tomorrow to see how Ellen’s view of the road ahead changed.
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