Home > Life, Pets, Politics, Really?, Spirituality/Religion > The Hardest Decision

The Hardest Decision

sure1I 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 my Weimaraner, 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.

Here’s where I may be crossing the line with this story:

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.

The wearer of these disposed diapers is the 32-year-old son of our neighbors who are in their mid-50s. 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…

I thought about mothers who complain about potty-training their 2-years-olds, while I rail on about house-training puppies, and I was struck by our insensitivity. I can’t even begin to comprehend the level of commitment these people have so humbly displayed as they’ve spent their entire adult lives caring for a child who was not expected to live beyond a few days. It changed my awareness and made me question some of my own convictions and assumptions.

I had 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 made the agonizing decision 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 to them when they were a young married couple in their early twenties. It turns out that their son was in utero for nearly 10 months and it went unnoticed by the doctors that the placenta had stopped feeding him past term. Had he been born on time, he would be thriving today. What I do know about these people 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 science teacher and the mother works with children who are also disabled. His sister and only sibling is a family therapist. His life has shaped theirs.

This story reminded me of when I was a little girl and my mom had a position teaching disabled kids at a special school where 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 a 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 have the experience of caring for someone who is so utterly dependent on us that our own sense of fulfillment is completely altered to accomodate that dependence.

My beautiful neighbors had no choice but to do their best to create a life in which their son could live as well as possible, but I think they’d be the first to say that they would not have chosen this for him. Had they had the option, they might have chosen to spare this young man the life he has been burdened with. Yet, through this experience, they have been graced with a depth of compassion that is required to care for someone who will never be able to care for himself. I would wish for anyone in his position to be so treasured by his family, but that’s not always the case. His life is exhausting and only after years of negotiating the respite care system have they worked out a manageable schedule.

I honor those who have made such a profound commitment to the life of another, but just as strongly, I honor those who were able to acknowledge their own limitations. It’s the hardest decision some will ever have to make.

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  1. Mel G
    August 6, 2009 at 4:12 pm

    Thank you for writing this and inspiring me to think. I will cease to complain about the fact that my 3 & 1/2 year old hasn’t mastered potty training yet. These folks go above & beyond, caring for their child, especially when services are available (and readily so) for them to pass their child off. People like that deserve a special place in Heaven and I only hope they get there.

  2. Tom
    August 6, 2009 at 6:42 pm

    A carefully, thoughtfully written piece … you raise up the distinction between convenience and commitment … and the roll of complaining in our culture.

    Thanks …

  3. Jennifer Winfield
    August 7, 2009 at 9:51 am

    As ever Ellen you make people think, remind us of humility and grace, which are ever present but all too often forgotten. Thank you.

  4. Karol Fenner
    August 28, 2009 at 2:47 pm

    Thanks again, Ellen, for writing about those moments that happened so long ago and how they changed your life. Did you know that Natasha died soon after you were inspired by her? . . .She was a powerful spirit and maybe we’re all better because of her short life . . . . but I still strongly believe in our right and responsibility not to bring life to someone that we know will not be able to exercise their will to end the struggle. To me, that’s a terrible kind of cruelty.

  5. Mickey Grooters
    October 20, 2012 at 3:10 am

    thank you for sharing this Ellen. Your entry today makes me wonder whether you provide respite care too for your neighbor? What a neighborhood.

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