Hearing Her Whisper in a Room Full of Shouting

It is a noisy time in which we live, and countless voices drift throughout our days and our nights. Unless we are among the most disciplined of people, the moments have become rare when we allow our souls the rest and quiet that they so desperately need. 

Instead, we consume. More and more, deeper and deeper, we fill the seconds and minutes and hours of our days with voices, words, images, messages. Often, we don’t even recognize that the media we consume is not only providing our entertainment, but feeding our affections. 

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When we first found ourselves navigating the world of Down syndrome, I had no idea what I was doing. I came to the table with very little factual knowledge on Down syndrome and quite a lot of preconceived notions and outdated cultural stereotypes. Through the course of time and the process of educating ourselves, my family has been able to put to rest many misguided beliefs that drove our fears and provoked our insecurities. I have come to realize that a diagnosis of Down syndrome does not mean life will be horrible; it is not the ultimate dream-crusher that I originally assumed it would be. 

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The Greatest Danger of Down Syndrome

Recently, I read a story about a baby boy born in 1982, known to us only as Baby Doe. Interestingly, this baby who had no name quickly became the center of national debate over the sanctity of human life.

In the court of public opinion, some found this newborn baby boy to be guilty of two grave offenses. First, he had Down syndrome. Somehow, he had managed to breeze through pregnancy without being detected, thus taking away his parents’ ability to abort him in the womb. Second, he was born with a (surgically correctable) condition known as tracheoesophagael fistual. Yet while a nearby hospital and its medical team were ready and willing to perform surgery on him, Baby Doe’s parents chose instead to follow the archaic and biased advice of the mother’s obstetrician…and they did nothing.

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Ascending Calvary: An Act of Love

The tip of the morning sun touched the horizon, sending forth stunning rays of orange, pink, and purple to color the skies above me. I slowly awakened from my deep sleep to the picturesque scene. Birds sang their songs of the dawn as they welcomed this new day with joy. But as I lay there, I only felt the familiar ache that had greeted me in my first moments of every day for the last seven years. 

My son.

There is something about the raw awakening of a soul in the morning that has the ability to draw out the deepest griefs of the heart. For the last seven years now, this same pain had been mine to bear. It was a ritual I had come to both dread and embrace; it was my walk of grief.

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Ascending Calvary: An Act of Assurance

My eyelids flew open with a start as I drew in a quick gasp for air. I panted quickly, attempting to settle my racing heart. My eyes focused on the tiny puffs of breath that escaped my mouth in the cold nighttime air. Searching my fuzzy brain, I tried to remember where exactly I was. Slowly, my senses came around, and I felt beneath me the cold, hard ground just on the other side of my thin bedroll. I looked to my left and saw the slight warm glow from the few remaining embers that burned where my fire once was. I remembered my hike. 

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Ascending Calvary: An Act of Dignity

Refreshed after my earlier stop at the creek, I managed to make quite a dent in the remainder of my hike to the summit. I looked to the west and noted that the sun’s descent into the horizon was hastening. It was time to find a resting place for the night, and it was also time to think about what I would eat for dinner. I did a quick mental calculation of what remaining food supplies I had with me. “Looks like I’ll be having jerky and cheese for dinner,” I said with just a hint of disappointment. A hot meal sure sounded good at that moment!

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