If a challenging quest is proposed to me, I usually embrace it. It’s especially appealing if it is full of unknown undertakings, guaranteed chaos, and involves terrain that most people would avoid at all cost. I believe that if I have the courage to say yes to unpredictable adventure, I will be given the strength to succeed, no matter how trying, and be all the wiser in the end. I was introduced to my unplanned expedition, in 2007, with one sentence. “Your son has Down’s Syndrome.”
I’m not going to lie. I didn’t heroically brave the news with enthusiasm and optimism. I was paralyzed with fear and panic, and immediately began to mourn the loss of my dreams. This was not what I had planned! I was twentythree years old, and I was suppose to go home with a perfect and healthy baby to meet his perfect and healthy older brother. I had pictured family travels around the world, mountain treks, and spontaneous jaunts. I hadn’t even met our son yet, but the words ‘Down’s Syndrome’ were enough to flip my world upside down.
Our little baby was intubated, covered in endless tubes, wires, and IV’s the first time I saw him. His floppy little body lay motionless, and his face showed little expression of life. The only reassuring sound was the beeping machines that gave him oxygen and kept him alive. We were told that he had congential heart defects, that he was deaf in one ear, and that he had suffered some degree of brain damage at birth. The journey was looking more bleak with every bit of news we received.
My boyfriend stood beside me like a rock. He showed only glimpses of vulnerability or fear, and to me, was the epitome of strength. Family and friends gave us words of wisdom and encouragement, and expressed to us how lucky our son was to have us as parents. Nurses told us how happy and loving individuals with Down’s Syndrome could be; they all smiled nervously at my silent reaction. I was furious that anybody would have the audacity to say such things to me. They were not faced with my future, and I resented their attempts to support me. I suffered silently, thinking it was perhaps better for him to pass away peacefully in his sleep. I longed to have life go back to what it was before his birth. This thought resulted only in taunting guilt as I passed myself off as a terrible mother.
It wasn’t until our midwife sat with us, looked into my eyes, and saw through my brave smiling face, that I felt comforted. “Feel whatever it is you feel without shame or guilt,” she said. My dam broke. It was a relief to confess my thoughts, and fears, my disappointments and anxiety. After exhausting and expressing every emotion to it’s fullest, I was surprised to learn that my boyfriend had quietly been feeling the same way; I didn’t feel so alone. Perhaps I wouldn’t fail as a mother for this child who needed so much love and care.
When our son was five days old, I was able to hold him at last. The acceptance, curiosity, and exploration began as I rocked him back and forth, listened to his soft breath, touched his little fingers and toes and whispered sweet secrets in his ear. As I gazed into his eyes, I saw compassion, understanding and wisdom in him, that was lacking in me. We made our vows. I said yes to him, and he said yes to life. We named him Nash.
We set off together into the unknown. Nash hurtled through heart surgery and quickly learned to run, climb, ride a bike, and swim. We have traveled the world, have hiked into the mountains with him, and he is always up for a spontaneous jaunt. I am living my dream with an extra chromosome attached to it. When the going gets tough and I feel like I am losing the way, Nash never fails to get me back on the right track – the upside of Down’s.