by "Vicki"
“Every waking moment.” It was a phrase I’d often heard, but it wasn’t until my son was born with Down syndrome that I knew what it meant. From the moment of his birth, my life changed profoundly in ways that are both indescribably beautiful and unspeakably difficult.
“Every waking moment.” It was a phrase I’d often heard, but it wasn’t until my son was born with Down syndrome that I knew what it meant. From the moment of his birth, my life changed profoundly in ways that are both indescribably beautiful and unspeakably difficult.
“Your baby has Down syndrome,” the doctor said.
I was incredulous. “My baby has Down syndrome? No. That can’t be right. This is the child I’ve been dreaming about my whole life. This is the child my husband and I underwent five years of fertility treatments to have. There is no more wanted child in the universe…he can’t have Down syndrome.”
But he does.
But he does.
And ever since, those words – Down syndrome – have floated in front of me, big and black and wavering and menacing. They hang between me and the mirror as I get ready for work. They float between me and the flowers as I tend my garden. They lurk between me and my friends as we talk. Worst of all, they are between me and my son as I gaze at his heartbreakingly beautiful face. They are always, always there, those silent ghost-words that stand between me and the real life that I’m supposed to be living.
Even worse than the words is the thought: “My child has Down syndrome.” That thought, that inner whisper, demands attention. It always precedes every other thought. When the phone rang in the middle of the night, my first thought was not, “This is it. Dad has died.” My first thought was “My child has Down syndrome,” and then “Oh no. Dad is gone.” When facing a deadline at work, “My child has Down syndrome,” always precedes, “I have got to get this project done.” When an old friend calls with great news, “My child has Down syndrome,” comes before “How wonderful!” It’s nothing if not predictable.
The other parents I’ve talked to about this all describe the same thing or something very similar. “When does it stop?” I’d ask. “We’ll let you know if it ever does,” was their reply.
June 4, 2009 at 2:59am is a moment I’ll never forget. I woke with a start to the sound of a loud “CRASH!” coming from my backyard. “What’s going on?! What is that noise!?” I thought. That was my first thought. For the first time in more than 17 years, “My child has Down syndrome” took second place in the race for my conscious. It took me a couple of minutes to figure out what was different, and when I did, the relief and fear of that moment paralyzed me. And, it has me still buried under a landslide of emotions.
I have no idea what caused the loud “CRASH!” in my yard very early last Thursday morning.
I like to think it was the sound of my real life, finally showing up.
I like to think it was the sound of my real life, finally showing up.
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