A Lonely Love


The online conversation went like this: A woman on Facebook posted an article about how a Monsanto chemical might be contributing to the rise in autism. Another woman, self-disclosing as autistic, said the article was fear-mongering and unfairly demonizing to autistic people. A third woman piped in, saying that because 30-some percent of autistic people have intellectual disabilities, it was right and just to fear the rise in autism. I cringed at the implied message: A life of disability is one thing, but a life of intellectual disability? That, in the woman’s eyes, was tragic.

So I added my voice. With tense shoulders, I wrote one sentence cautioning people against assuming a life with intellectual disabilities is tragic. In response, I thought maybe there’d be some cyber-nodding. I hoped maybe the third woman would realize what she was implying, and say, “Oh of course, yes, I didn’t mean it that way.”

But instead the original poster wrote a reply a few inches long, defending the third woman’s views of intellectual disability. She wrote that it “isn’t ableism” to want your child to have all of their limbs and sight, so it’s not ableism to want your child to be able to enjoy all the benefits of a fully cognitive life—like reading and writing. That was just good mothering, she argued. “We all want the best for our kids.”

That’s about when I closed the computer and carefully backed away. It wasn’t that I disagreed with the woman exactly, although it wasn’t that I agreed with her either. Something inside me was sad, so sad that I wanted to strike back, offer a persuasive treatise, construct an argument using transitional words like Consequently and Furthermore. I wanted to deliver this argument (about what? I wasn’t sure) not to the first woman exactly, who was kind and good (and justified in taking Monsanto to task), and not to the third woman, whom I didn’t know, but to something bigger, maybe the unfathomably vast and noisy air around the culture-at-large. Yet all of it, every word I’d write, would just be armor over a sadness I couldn’t quite name. And armored, ineffable sadness does not, my friends, make for an edifying Internet exchange—this much I knew. So I backed away.


“Wait,” I said to my husband. “Can I just say one more thing?”

We were standing in the kitchen, surrounded by dirty dishes and grubby counters. Five minutes ago, we’d been in the living room. We’d been sitting on the couch talking about the online conversation, rehashing the fine points, disliking Monsanto (of course) but also wondering whether it was in fact ableist to want a fully able-bodied kid (my husband said yes). But now we were here, in the kitchen, washing dishes, and I was trying to put the subject behind me. I was trying to listen to his day. I was nodding and watching him scrub. Suddenly I stopped him.

I had one more thing to say. I had the thing to say.

“Go ahead,” my husband said.

I said it slowly and clearly and sadly, and the sentence felt as weighty as a psalm: “It’s hard having a child that other people actively don’t want.”

There it was. My husband stopped what he was doing—scrubbing the stove? putting away silverware?—and turned to me. He opened his arms for a hug.

I pressed my cheek into his fleece sweatshirt and stared at the wall.

“I want her,” he said.


I want her too. With all my might. I want her, and not the her that she would be if she had all her fourth chromosome. I want who she is, as she is. This is another kind of good mothering.

It is strange, though, this loving. I love the kind of kid that others are permitted to say they don’t want. Most pregnant women won’t admit that they don’t want a girl, or a boy. But about their future baby, they’ll say as long as it’s healthy. And people will nod. Because it’s okay in our culture to say this. Because when you suggest that a life with intellectual disabilities is not a life less worth living, you might incur inches-long Facebook replies of adamant disagreement.

A friend recently said she didn’t want to have kids too much farther past her present age (37) because of “the risks.” The friend didn’t tell me directly. The friend told another friend, who then told me, and when I heard this I cringed. We all know what “the risks” are. They are a code for people like Fiona.

I’m not saying these parents are “wrong” for wanting a certain kind of child. I’m just saying it’s hard living in the zone of parenting other people hope to avoid.

It’s hard having a child other people actively don’t want.

Do you ever say a sentence that strikes so firm and clear and true on the nail of your emotions that you can practically hear the ding? It’s a pleasant feeling, hearing that ding. In my husband’s arms, I looked at that kitchen wall and repeated the sentence to myself again and again. It explained so much about the loneliness of this life, the life of parenting Fiona. It explained the fatigue I sometimes feel after going out in public with her. Beneath people’s adoration of Fiona, of her beautiful smile and striking blue eyes and eagerness to connect, is the unnamed truth: some people feel blessed for not having children like her. And that is a sentence I choke on.


I know the pat reply: “They don’t know what they’re missing.” “Fiona is special, a gift from God.” But none of that erases that the culture-at-large often sees her life situation as sad. “My daughter is nonverbal and uses a communication app,” I told someone. The woman’s mouth turned down into a frown, and she offered me puppy eyebrows of sympathy.

Sometimes you have to turn off the voices, the Internet noises. Sometimes you have to turn toward silence, which feels like turning toward the source, as pregnant with quiet as the cushioned sound of air in a snowfall.

But sometimes you need other people to remind you how to do that. So a few evenings later, after the kids were again asleep and my husband and I were left with the day’s final labors—dirty dishes—I closed down Facebook and hit play on Krista Tippet’s podcast, On Being.  I hadn’t listened to it in months, but by chance, she was interviewing Jean Vanier. He’s the founder of L’Arche, which are communities of “people with and without intellectually disabilities liv[ing] and work[ing] together as peers.”  L’Arche USA’s website says, “People who have intellectual disabilities live in the shadows of a persistent view—present in all cultures—that they are the undesirables. This is one of our world’s significant injustices. It is one we can change.”

Vanier found his calling when he encountered men with disabilities in a French asylum. Tippet asks him about his experiences there, and this is his reply:

I come back to the reality of pleasure, and to the reality of what is my deepest desire? And what is your deepest desire? And the deepest desire for us all is to be appreciated. To be loved. To be seen as somebody of value….

So really, the first meeting I had with people with disabilities, what touched me was their cry for relationship. Some of them had been in a psychiatric hospital, others, all of them had lived pain, and the pain of rejection. One of the words of Jesus to Peter, you find this at the end of the gospel of John, “Do you love me.” So there’s the cry of God, saying “Do you love me,” and the cry of people who have been wounded, put aside, who have lost trust in themselves, they’ve been considered as mad, and all the rest, and their cry is “Do you love me,” and it’s these two cries that come together….

Here’s the balm: cries come together. Love by design won’t stay lonely. The comfort is in the cry itself. It tells me: answer back.



Fiona in a wide-brimmed straw hat, looking off to her left.

65 thoughts on “A Lonely Love

  1. When asked asked about “fixing” my son Liam with severe disabilities and extensive medical issues my reply has always been I wouldn’t change him, but if I could change his journey I would. People look at me strange when I reply that way. My son is so loving and charming. He just endures so much physical pain. If I could make the physical and emotional pain go away life would be perfect for my boy.

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