It’s been said that truly defining moments come only a few times in a person’s life. For me, one of those moments came when my mom showed me what it means to choose life.
For several years, my mom had been working for a nonprofit in our town that offered support for adults with special needs. In addition to operating day facilities, the nonprofit placed its clients with a local family willing to host and provide long-term care services. Having watched other families graciously open their homes, my mom decided it was our family’s responsibility to do the same.
Looking back, I’m grateful she did.
I was in junior high when a young man named Derek became a part of our family. Short and skinny, Derek, then in his early 20s, suffered from chronic and frequent seizures that had taken a devastating toll on his cognitive and ambulatory abilities. Although he could walk short distances without assistance, he was typically confined to a wheelchair.
Other than the occasional squeal of delight or soft coo of interest, he was entirely nonverbal. But he could smile, laugh and show anger, just as easily as anyone else, and he could signal when he wanted something, which in many cases was a simple pad of paper and ballpoint pen. He loved scribbling on paper; it was not uncommon to find around the house tired-looking notebooks sprawled open, every page peppered with random dashes and doodles — Derek’s calling card of sorts.
Time spent with Derek was usually replete with joy. In no small part, this was because Derek had a very robust sense of humor. As an example, one evening, after arriving home from a day of errands around town, Derek discovered that he if refused to leave the car, he could get my mom to run circles around the vehicle. As she would open the left-side car door, Derek, now unbuckled, would slide across the seat cushion to the right side of the car. When my mom darted to the right side and opened that door, a giggling Derek would slide back to the left side. Repeat generously and you begin to see just how ridiculous — and hilarious — the spectacle became. It ended with tearful laughter on all sides.
Of course, there were unhappy times, too. No more was this true than when Derek’s condition reared its ugly head. Usually, the only warning was the sound of a dull thud — Derek hitting the floor. My mom would rush to his side, but other than gently hold him to prevent injury from the convulsions, she could only wait until it was over. In those agonizing seconds, Derek’s small body would twitch and jerk uncontrollably as he yelped and struggled to breathe. His eyes rolled back into his head and his face contorted with each spasm. When he finally came to, he would draw long, labored breaths and whimper softly, turning his sad eyes to my mom. She cradled his head and torso, soothing him with warm reassurances as he recovered.
In these moments, the frailty of Derek’s existence came into focus. He was utterly helpless. He could not talk; he could not walk; he could not cook; he could not clean; indeed, he could not care for himself in any meaningful way. He was, in the most desperate sense, entirely dependent on another’s grace to just to continue living.
But in this naked vulnerability, I found the beauty of my mom’s caregiver role; she was completely devoted to him. Though his life was delicate and rife with challenges, my mom never viewed him as anything less than a child created in God’s image, deserving in every respect of all the love, dignity and opportunities life had to offer. He was a special gift and would be cherished as such. And he was — even as he passed away this past January at the age of 37.
I often think about Derek when I see signs of our country’s weakening grasp on life’s self-evident worth. Most noticeably, there’s the despair epidemic. As of September 2019, “deaths of despair” — a phrase coined to describe deaths by suicide and drug and alcohol poisoning — are occurring at a higher rate than at any point in more than 100 years. A separate report found the United States is suffering the highest age-adjusted suicide rate recorded since 1942.
Outside of suicide and substance abuse, a 2012 review of 24 studies revealed 67 percent of women would rather abort than give birth to a child with Down syndrome, despite overwhelming evidence that people with trisomy 21 can lead happy and fulfilling lives. Abroad, the practice of euthanasia and assisted suicide are growing increasingly common; some doctors even support the use of such measures to treat psychiatric disorders and dementia.
These trends are indicia of an emerging culture of death. They reflect a growing acceptance of the premise that sometimes, life just isn’t worth it — a hideous lie disproven by people such as Derek.
As we celebrate Mother’s Day, we think about the lessons our mothers teach us. In my case, more than anything else, my mom showed me what a culture of life looks like up close. It’s painfully hard work and personal sacrifice that can be both joyful and frustrating, sometimes simultaneously. It’s waking up extra early to change, bathe, clothe and feed a man who can’t do so for himself, for no other reason than his life, like ours, is precious. It’s an affirmative choice to press onward, even when hope is nearly exhausted.
And yes, for heaven’s sake, it’s worth it.
Thomas Wheatley is an attorney and writer in Kansas. He was a 2016 Publius Fellow at the Claremont Institute. Follow him on Twitter @TNWheatley.