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.

 

IMG_8739

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

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60 thoughts on “A Lonely Love

  1. In a different context, mostly about sexual orientation, this is something I hear a lot.

    “Nobody would choose this.

    And when people say this, with their words, their generalizations, their puppy dog eyebrows, they’re imagining something big, unfathomable, terrifying. They aren’t imagining real life, with the messy counters, dishes to be washed, and too long bedtimes that they might find a lot more familiar.

    It doesn’t make what they’re saying any less damaging or lonely, but it does make it less real. When they say that your child, your life, is one that they don’t want, they’re speaking about a child and a life they don’t know at all.

  2. I love this post. I work with children with intellectual and physical disabilities. One day I would like to foster or adopt a child similar to those that I spend my working days with. When I have told friends and family of this dream, they are polite enough but I can tell they cannot understand why I would choose this over a “healthy” child.

    Sometimes it feels like I am wearing a pair of glasses that allow me to see things others don’t. It makes me feel sad for others because they don’t see the beauty. We are the lucky ones. There may not be large numbers of us but rest assured there are people out there who want and would choose children like your beautiful daughter.

    Thank you for putting into words what I have felt for a very long time.

    Emma

  3. I think of myself as an open-minded, accepting person. But you’re right, I said those words throughout my two pregnancies often – to myself, to others – “as long as they’re healthy”. I didn’t think about what it might sound like to someone else. Now that I’ve read your piece, I think that statement is more about me than anything else – how unsure I was, am, about parenting a child with disabilities…how unsure I am about whether I could do it, could do it well, could love enough…about whether my heart would survive…does that make sense??? Now that i have two kids whom I love more than anything else, I feel like I know that I would be able to do it – I would love them no matter what, to the fullest of who I am, regardless. I don’t know yet what kind of problems will crop up on the road we’ve set out on, but we will move forward… in any case this is a beautiful piece, thank you for sharing, helping me think, and helping me understand a little bit more.

  4. I am autistic, and I want to be a parent. I am apprehensive about adopting older kids only because I don’t know how to parent them (yet), and because we barely get by financially. We are trying for biological children too, but don’t know if that will happen. There is an above-average risk that any kids we have will have challenges; that doesn’t scare me. Thanks for reminding me that wanting and loving a kid is more important than whether I feel “ready” for them or not.

  5. Beautifully perfectly written. I needed this right now. Thank you for touching my heart. It’s tough what people say or assume of our kids and what they do not know.

  6. For as long as I can remember I wanted to adopt “all the kids no one else wanted”. That didn’t happen, but God did bless me with three children who are very wanted. My boys both have different challenges that set them apart from “normal”. Your sentence “It’s hard having a child other people actively don’t want” resonates with me deeply as that is truly what I feel too! Thank you.

  7. What a beautiful piece. As a pediatric RN, I care for many families with children that others “actively wouldn’t want”. The love and care these families provide for their children is beautiful and everlasting. We do not know what life is going to hand us and this is an excellent reminder to think before you speak (or write). I especially loved your husbands reply to your comment. Thank you for sharing. I immensely enjoy your blog posts.

  8. Thank you for this beautifully-written piece. We have a child who is “profoundly gifted”…we have known he was different from the beginning because of the way people treat(ed) him and the way people treat(ed) us. He learns extremely quickly (done with high school at 13) and needs no repetition, can understand complex concepts and often doesn’t need to do an exercise to understand a theory. Some people think he is a smarty pants, a smart ass, a suck up. Some people like to say, when we try to express the loneliness of his days -he has few peers- and the loneliness of our parenting, “That’s a nice problem to have, a kid that’s ‘too smart’.” or “Yeah, we were all gifted kids, too, and we survived. The fact that kids in the upper .01 percentile are 40% more likely to self-harm or attempt suicide or use drugs because of their boredom and asychronous development (emotions of their chronological age, intellect far beyond their years) doesn’t seem to cross their minds. Kids like Louis are not seen as having special needs; how could you need something if you’re that “smart”? We are not having the parenting experience we thought we’d have but, like you, love our child deeply.Thank you for reminding me that it is that love that matters, and for your beautiful writing.

    • Jacquelynn, thank you so much for sharing your story! I published an essay in the May issue of The Sun called “The R-Word,” about the word “retarded.” When I got my copy, I saw that the issue’s focal interview was with an advocate for gifted children, who talked about stories such as yours. It was so interesting to see some of the common issues for kids on either edges of “the bell curve.” IF you haven’t seen the interview, you might like it. Here’s a link. http://thesunmagazine.org/issues/473/beyond_their_years

    • This is the first time I’ve seen this blog, but I’ll definitely be reading it from now on. I was one of the children others would “actively not want” and I’ve seen and felt it every single day, but never could put it into words until now, after living it for almost 50 years. Profoundly gifted and physically disabled, I had no real friends. My advanced brain wouldn’t let me have conversations with kids my age, and my physical limitations meant I couldn’t even play a simple game of tag (something that didn’t matter if we couldn’t really communicate), either. To this day I’ve never really learned to deal well with the stares as I walk down the street, because people aren’t used to seeing someone who walks the way I do.

      I’m sobbing as I write this. Maybe there ARE others who struggle as I do. Until I found your blog, I’ve never met them. Thank you. I don’t feel quite so lonely.

  9. Beautiful, just what I needed to hear after being bombarded today by people, even professionals, forgetting to celebrate my girl’s triumphs and only seeing what she “can’t” do.

  10. I had a lengthy exchange about the same article with someone yesterday. My son is autistic. People who post these articles don’t realize that, (lack of) facts aside, they sow fear and reinforce prejudice among an already marginalized group of people. It’s hurtful. It’s damaging. Thank you for your words, thank you for sharing the thoughts and feelings I carry with me every day.

  11. It is a reality that a parent wants a healthy child, a child without issues not covered in the general baby book. The initial reaction from most parents when they first get word that there are differences is fear and sadness. This sort of message can come up anytime in a child’s life, from pre natal screening right up to adulthood, and no one wants that kind of news. It’s just a fact of life. When you have a child that is different from expected and those differences are noted right at birth, it just happens at an early time, and at a time when parents are hopefully waiting to hear from the doctors that all is as usual.

    Sometimes the “disappointment” is a true alarm, and reason for great fear when the news has a life threatening condition requiring intensive intervention right on the spot. Sometimes the disappointment is a spurious one, expecting one gender over another (though that is usually a known factor these days by the time birth happens), or a child with colorings, features that were unexpected. My friend burst out in tears when her sweet daughter was presented to her and she looked like a pluck chicken in coloring and other features. Hormones, and unreasonable expectations that she was going to get a fat picture book baby, and a big one at that with her tremendous weight gain. Nope, barely 5 lbs on a 20 inch frame and with jaundice. Most of the time, we fall in love with the child and often find endearing qualities about what was unexpected, and frankly, unwanted. Things that are painful and require more work than the parents can do (and yes, there are parents who do not address medical conditions, handicaps, some that simply can’t as they are barely hanging in there, as is) and can be hurtful for a long time. This is when it becomes a life skill as to how to deal with unexpected news that require a change in how one leads ones life.

    Most parents do have some expectation that their children will someday be self sufficient, with many getting setbacks on the timelines and the how of that self sufficiency right down to the trauma of a death of a child that squelches things once and for all. It’s all normal and you really can’t help how your feel, particularly the first gut reactions when caught off balance. The later feelings are what can be more lasting.

    I can give many, many examples where parents who first mourned some news about their children who then embraced what that entailed.

  12. I frequently check in to your blog anxiously awaiting a new post because you always end up articulating feelings and experiences that I haven’t been able to. Thank you. It makes me feel less alone.

  13. Amen. It is hard… not because it’s hard to love that child. God, there’s nothing easier. Not because that child is less than any other child. God, he’s more compassionate, more loving, more motivated, more patient, more trusting… more. It’s because the world thinks it’s hard to love him. It’s because the world thinks he’s less. And the world needs to go take a flying leap.

  14. I love this post so much. I love you for writing it and I love your little Fiona for inspiring these thoughts by being just who she is. That’s all.

  15. When I look at that beautiful face ,I see a sweet girl and if you told me she uses an app I would say cool .Not everyone is alike.

  16. This is beautifully written – honest, thought provoking and true! I can relate to this so much as my daughter has intellectual delays. She is only 8 months so we are still in the phase of “she’s a baby so everyone thinks she’s so cute!” I fear the day that her cognitive delays become obvious and undesirable to others. This makes me think back to when she was in the hospital, the step down level from the nicu. They moved her down there overnight without telling us and when we got there in the morning, there were zero security measures to get to her. Normally there are 3 barriers to get through to get to the “normal” nursery to prevent baby stealing. I didn’t say it out loud but I thought “well no one would want to steal these babies that are medically complex” and the thought made me sick to my stomach. To this day, I’ve never said that aloud. It’s just sad. I want my daughter with every fiber of my being but it’s sad that no one else would.

    By the way, your sweet daughter is beautiful and you are an amazing mama!

  17. I have a 6-year old son with Down syndrome and he is the light of my life. But there is a heaviness, as you say, underneath my armor. Thank you for giving words to a feeling I have had since he was born.

  18. Thankyou for your words. I have 13 year old twins that were 15 weeks prem. we have ongoing issues we manage, like high functioning autism, anxiety, sensory, low tone, paralyzed vocal cord…..we manage everyday to not have these issues at the forefront but sometimes I want to scream, they are there, they are real and I don’t care what you think, but that look you just described is what stops you doing this.

    I work in the disability area as well, with people with a whole rainbow of disabilities. Some of which moved from institutions to community care. I agree people want to be included, appreciated, recognised, loved. I always told the staff, your job is to support them where they need it, not to think you can teach/improve them.

    I have a wonderful story of training a group of staff, initially they said a resident had no skills, afterward they said they couldn’t keep up, that the person needed support but could do anything with it. That person was beaming, they were appreciated for everyday things that we all do. They were real and loved and a part of life. They made a difference in my life and that makes them desirable. I wouldn’t change them as their smile was worth so much more.

  19. I loved reading your thoughts on this. As the mom of a son who has cognitive and physical disabilities I feel like there is a part of me who feels similarly. I love my son with such intensity and I love him just as he is.

    Still, there is a part of me that wants him to be healthy and neurotypical. I want him to walk. I want him to talk and say what he thinks and feels. I want him to have favorite friends. I want him to play and argue with his siblings. I want him to be toilet trained. I want him to grow up and become independent. I want him to marry and have children. I want him to live into adulthood without seizures and respiratory weakness.

    I often feel guilty that I cannot get to a place emotionally where I am content with this special needs life. I long for typical life for my son and myself. I walk around every day with a very real ache of sadness in my chest. Ever since the day that my son was diagnosed with Mecp2 duplication syndrome this ache has been there. It waxes and wanes as I enjoy every milestone that my son (who works so hard! achieves). He brings joy and love to everyone around him. I know that his life has great value, no matter what his abilities. I see this every day. Yet if I could cure him, I would.

    Thank you for sharing this. It really touched me.

  20. Thank you for this exquisite articulation of feelings that I have been unable to identify within myself. I am an on-the-job support person for young people coping with disabilities and have been witness to the “cry for relationship”. As a result my heart skipped a beat at your last paragraph which contained the answere to a question (to myself) as to why I am so drawn to this work:
    “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.”
    Wow Heather, thank you!
    Johanna

  21. This was beautiful and I have shared with friends. The difficult thing for me is to separate my beautiful child from her disability. When my sis was pregnant, there was a question of enlarged ureter (soft marker) and the response was family terror and frantic googling and reassurance. I know the underlying fear was that her baby might be like my daughter or ‘like E’. It’s not that E is not loved, but the fear of living with disability is too much. We have dreams for our children, and disability shatters those imaginary lives. grieving the disability is part of our life.

    I’m sure I’m not coherent.

  22. Just hopped over from The Mighty. Thank you for this though-provoking and challenging post. I haven’t read the other comments, but I was just thinking about a family I know that has an adopted daughter with several developmental challenges. They chose her. And they knew exactly what they were getting. I want to be like them, or at least have that kind of love. Thanks for this post. I am sure I will be ruminating on it for days.

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  25. Years ago, I read about an incident where one mother of a child with physical and cognitive disabilities encountered a father she knew in public, whose child had different disabilities, and thought, “I don’t know if I could manage his child’s situation. . .compared to his, my child’s doesn’t seem so difficult!” She knew, of course, that the father was most likely thinking something similar about her and her child.

    Human beings fear the completely unknown, the relatively unfamiliar, and the stereotyped. In the early 2000s, I read “Choosing Naia: A Family’s Journey,” about a couple’s decision to continue their first pregnancy after their daughter’s prenatal diagnosis of Down syndrome with a serious but surgically-repairable heart condition. The most sensible, logical thing Naia’s parents did was ask their genetic counselor if they could meet other parents and DS children, especially firstborns with similar cardiac conditions. What astounded me was reading that this was considered (in the late 1990s) an unusual request. All expectant parents with prenatal diagnoses should be offered such introductions. During a medical-ethics discussion, I once mentioned that selective abortion was not necessarily the only purpose of prenatal screening: perhaps there are parents who want to be prepared for their children’s disabilities, medically and otherwise.

    I am not a parent, but know (from my own experiences as a less-than-perfect child) that being a parent or a child should mean more than being part of a dollhouse plastic family playset; being a family should give parents and children opportunities to be real human beings. Sometimes being Real (like the Velveteen Rabbit) includes disability, and disability is neither a lifetime of despair nor Treacle for the Soul.

  26. This reminds me of how Brene Brown talks about dealing with your critics. She has a 1 by 1 inch little piece of paper. And on it she writes the names of the people whose opinion actually really matters to her. She carries the paper with her and reminds herself from time to time when she feels criticized if that person’s opinion really matters to her (and it often doesn’t). She also differentiates between people who provide feedback who are really “in the arena” and have skin in the game vs. those in the cheap seats just hurling critique – and she says if someone doesn’t have skin in the game she simply does not listen to or take note of their feedback. You can’t try and convince the whole world and you don’t need too. These quotes are from this video: https://www.youtube.com/watch?v=kAk4cwjvJ0A

  27. thank you for this. my husband and i have had similar conversations; it’s most difficult when the comments that spear come from close friends and loved ones. isn’t it enough that we have her? that she is loved? and perfect no matter what comes our way as a family? what’s enough? i think it’s enough that we have her. that we got to have her. that we were given her.

    your children are splendid, and i am so grateful you are out here in the sphere talking about these things, these nights, these words…they matter to so many of us.

    also, your daughter uses a communication app. that’s cool. and perfect.

  28. This is the most beautiful thing I’ve ever read. I think about it a lot. I don’t want to say “all the time” or even “every day,” because I don’t think there’s anything I think about every day except maybe how much I hate math, but I’m such a hyperbole girl that I’m not sure how else to say it.

    “It’s hard having a child other people don’t active want” is such a striking, painful line. You’re right, it gets to the core of everything.

    I don’t know what else to say; there’s too much in my chest. Maybe I just want to thank you. Thank you so much for writing this. It’s everything I’ve wanted to say – about different circumstances, granted, but perhaps not so irreconcilable – and more. Thank you.

  29. My situation is different, but this resonates with me. I’m an autistic woman who actually *wants* to have one of those children other people actively don’t want. I’d welcome any child, of course, but my dream child would be one who is autistic, like me. And for wanting what others don’t want, I’m seen as a horrible selfish person by some people.

  30. I was drawn back to this today — so many months after reading your initial blog. Those early years with my now 25 year old autistic daughter were so busy with 3 other little ones, every possible type of therapy for years, and all the events of our family. Now, my other kids are grown and gone — life is slower. I’ve lost the supportive togetherness of the parents who surrounded our family through our kids’ sports and school events. The best and most proactive activity I’ve become involved with is my local Board of Developmental Disabilities where I’ve become a board member. Learning to navigate the system for adults with disabilities is complicated, and it differs in every state. To truly be an advocate as our children grow, my advice is to find away to connect with other parents, adult service providers, and local DD policy makers. The love is still lonely. We are pretty much expected to care for our adult children until we are physically unable or until we die! (unless you are very wealthy and can afford private caregivers). Only the very medically fragile or dangerous, or abandoned children (and eventually adults) live outside their own home. The part that makes me saddest as a turn 60 is seeing friends who now are enjoying their retirements with travel and spontaneity.

  31. “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….”
    So beautiful and poignant. We all want to be loved for who we are — I appreciate your reminder (and Vanier’s words). Through your writing, more people will learn and actively reach out to show children of all types of abilities and needs and backgrounds that they are loved just as they are.

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