Shoulders

I write this post with tears streaming down my cheeks…a grieving of injustices and tragically misguided understanding of the value of life for those with Down syndrome. And as I reflect on the future I expect to give my daughter, I also weep from the overflow of gratefulness for those whose shoulders I stand on. I pray that my participation in history will create a better world for future generations of children living with Down syndrome.

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Name

A name is full with meaning and can be powerful, so choosing a name for our daughter was something we spent much time discussing. Hilariously, Rachel means ‘little lamb’ and Russ means ‘fox-colored (red)’. So the lamb and the fox were keen to identify our daughter outside of the animal kingdom!

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Foreshadows

Married and talking in hushed tones as our daughter Madeleine slept in her nearby crib, Russ grabbed the antlers from his nightstand. His rough and slivered hands caressed the tines and he humourously asked, “Which one do you think Madeleine is?” I giggled at his seemingly ‘crystal ball’ approach to the set. His hand found it’s way to the smallest tine at the bottom of the antler…

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Heart

When we finally sat with the doctor, we were like two teenage kids, footloose and fancy free….not prepared for what she had to say. After inquiring about our knowledge of our baby’s possible heart defect, she allowed me to describe in layman’s terms what we understood. She then turned her computer screen toward us and typed in AVSD. I recognized the acronym from a Facebook group I’m in, where families of children with Down Syndrome and heart defects share their stories. I knew immediately, this was worse than originally thought.

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Sharing

It was time to share our news with our families and friends. Having undergone the feelings of shock and concern in our own hearts, it was time to feel the tremors of those feelings in the faces and voices of those we loved. I carefully crafted a message to send out, which explained the diagnosis: […]

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Aftermath

I imagine my soul would have spoken up at some other point, if not in this aisle at the library. Either way, I would not have been ready for it. I looked down at Madeleine who was observing the shelves for herself, from the akward angle of her stroller. A sickening feeling began to creep up my spine and I immediately wanted to escape. I looked once more at the variety of books this isle offered and my soul expressed to my searching self what it really felt, “I wish I had no reason to be standing here.”

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Binge

The Parent's Guide to Down Syndrome

Over the next 48 hours, I binge watched Youtube and every single clip that had anything to do with Down syndrome (Ds). I watched countless families stories, a day-in-the-life-of home videos, educational clips about Ds, and the options went on and on. Some of the videos were encouraging, hopeful and honest. Others were discouraging, ambiguous […]

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Diagnosis

The next day we drove back to Spokane for the scan and a chat with Tanya. I felt the emotions of the day brimming at my eyelids as we drove and talked. When a good friend had called me a couple years ago to tell me he had ‘just the guy’ for me, he described […]

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Results

As promised, Tanya called me back on Tuesday. Her call came late in the afternoon and Russ was home. I handed Madeleine to him as I glanced at the familiar number on my phone and I perched on the couch, looking out the window. I half wished I’d grabbed our calendar to remove the guesswork […]

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