Down syndrome Awareness: Lucy Claire

Down syndrome Awareness Month : Payton

Join us in October for Down Syndrome Awareness Month as families from one of our Ds support groups share,
what they wish others knew about their child with Down syndrome.

They say, when your life ends, it flashes before your eyes.

I remember hearing the words like it was just this morning. “Your results came back with a 99% likelihood for Down syndrome.” I was at work when my doctor called me and my world stopped turning. After routine blood work at 12 weeks along in my pregnancy, we’d gotten flagged for further testing. Receiving our daughter’s diagnosis was not gentle. It was not easy, or magical. I won’t sugar coat it to make it sound anything less than what it was: painful. Our entire lives, what we’d lived up to that point as a family and all the plans I’d made for us, flashed through my mind. I was overcome with grief.

A prenatal diagnosis is a mixed bag. While there is blessing in preparation, in knowing exactly what you’re in for, there’s also such heaviness to bear before ever laying eyes on your little one. You don’t have the sweet smell of a baby’s head to comfort you. Chubby little hands can’t wrap themselves around your shaking fingers. There are no midnight cries to drown out the sounds of your own sadness.

Lucy was born on a hot summer morning in June of 2020. We were in the throes of the Corona virus pandemic, and hospital regulations were extremely strict. No family was allowed with us; no friends in the waiting room with balloons and flowers. My mom, who’d been with us at the birth of both of our boys, wasn’t allowed in the delivery room. It was fitting, in a way. Our pregnancy had felt so isolating, between our prenatal diagnosis and the quarantine in the spring. Lucy’s birth was no different. Isolating. Lonely. We were on an island, all on our own.

I prayed for months leading up to the birth, about the people who would be surrounding us in those first few moments. I had so much fear, not only for Lucy’s physical health, but for my heart. I dreaded the look that I anticipated from the nurses and doctors when they laid eyes on her. I feared the “I’m sorry” I was sure we’d receive.

So when Lucy made her way silently into the world, barely whimpering, a ball of pink in the truest sense of the word, I waited holding my breath. We knew there was a very high likelihood.

When they placed our sweet girl in my arms, with her blue-tinted skin, all of a sudden it didn’t matter. It’s magical, how that happens. Of course it felt overwhelming. Of course I wished, deep in the darkest parts of my heart, that she would not have Down syndrome. But my baby was here. She was whole. She was moving, and making sweet noise. Our long awaited girl has finally arrived, and she was better than anything I could have imagined.

I’m 31 years old. I have two very healthy, active boys. I’m a social worker, a believer… a “good person.” When we received Lucy Claire’s diagnosis, I remember thinking: I don’t deserve this. We don’t deserve this.

It’s been a year and a half since we received our prenatal diagnosis, and I stand by that fact. We don’t deserve this. We don’t deserve HER, Lucy Claire, in all of her goodness and light. Nothing we could do would ever make us “deserving” of all the WORTH she brings to our family.

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV

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