The Hardest Decision

I need to pose some questions and they may be a little hard to take because it’s such a sensitive subject. I hope I don’t step on any toes…

Today, Thursday, is the day of the week when the dogs and I go out and commit a sort of  ”backhanded” random-act-of-kindness. In tacit agreement with the neighbors (tacit because they don’t actually know they’ve made it), I violate the leash law and let Wacky Jack zoom up and down the street while I travel the cul-de-sac retrieving everybody’s trash cans and putting them up by their houses. I figure that’s a fair trade. Besides, I am in charge of the rules while everybody is away

Here’s where I may be crossing the line in my story. God, forgive me if I am but I need to wonder aloud about it.

As I flipped up the trash can of one of the neighbors I was greeted by a surprising odor. Diapers. Plenty of the neighbors have receptacles that smell that way but I hadn’t even considered that this one might. My “aha” moment hit me like a punch in the gut and made me want to write about it.

The wearer of these disposed diapers is the 32-year-old son of our 60-ish-year-old neighbors. He is profoundly disabled, completely confined to a wheelchair, and possesses the mental faculties of a 3-month-old. He can’t talk or feed himself,  and he certainly can’t do anything about his excretory functions. For 32 years, his parents have been changing his diapers…

Suddenly I thought about others who complain about potty-training their 2-years-olds, while I rail on about house-training puppies (which only takes about 12-14 weeks), and I am appalled at our insensitivity. I can’t even begin to comprehend the level of commitment these people have so humbly displayed.

Recently, thanks to a gin and tonic, I was able to be even less sensitive when I asked the neighbor if their son had been expected to live this long. She replied that, no, he hadn’t. Thankfully, I had the good sense to let the subject drop, since we were in the midst of a gathering of people. But on my own, it changed my awareness and made me question some of my own convictions and assumptions.

The other day I read an article about the killing of Dr. George Tiller, the late-term abortion provider from Kansas who was gunned down by an anti-abortion activist. On either side of the issue, people are passionate that Tiller was either a savior or a savage. Many of the fetuses that were aborted were like our neighbors’ son: profoundly disabled, would have been unable to care for themselves, and the mothers had decided that they would not be able to provide the necessary support to give these children any reasonable quality of life.

I don’t know what my neighbors were like when their son was born or whether they’d had the option of terminating the pregnancy. What I do know about them now is that they are some of the most compassionate people I’ve ever met and even as they get older and are less easily able to take care of their son, they continue to do so without complaint, loading him into their van to take him to adult daycare on the way to their teaching jobs. The father is a middle school principal and the mother works with children who are also disabled.

When I was a little girl, my mom had a position teaching handicapped kids, and my sister and I would often go to help her. That experience changed my life, as I watched those kids struggle to negotiate what was so easy for me. I’m humiliated now to think that I don’t even like to wear shoes with laces because I’m too lazy to tie them. The kids there who were able enough would spend hours mastering that skill and then pump their little hands up in the air like Rocky when they finally did. All except for tiny Natasha, who had brittle bone disease. The simple act of throwing her hands up in the air would have resulted in multiple fractures. She never was able to tie her shoes, but her big brown eyes were always grateful to anyone who did it for her, even though the shoes weren’t really necessary. Her leg bones couldn’t support her 20-pound body, but the shoes did help to keep her foot bones from spontaneously shattering with the slightest jostle.

Most of us won’t ever be in a position to make the decision about whether to bring a child into the world who will not be able to “enjoy” all the things life has to offer, a child who won’t whine about getting a cell phone because all of his friends have one, who won’t sullenly rebel because he can’t use the family car when he wants to. We won’t get to have the experience of caring for someone who is so utterly dependent on us that our own sense of enjoyment is completely altered to accomodate that dependence.

But mostly, we will never have the opportunity to learn the depth of compassion that results and is required to care for someone who will never be able to care for himself. Are we really better off?

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Tags: abortion, compassion, profound disability

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