"See," she said, "he's heartbroken. I should never have listened to you!!"
A few minutes of conversation later, the phone slammed down. Apparently I am incompetent, unethical and my ideas are ridiculous. I'm old enough to know that routinely, through my life, these all have been true. I've learned to expect that in my life yet to come, they will occasionally be true again. I have no need to be seen, or to see myself, as infallible. But, in this case, I'm not sure I concede her point.
I met her, while having tea, in a downtown mall somewhere on my travels. It was a couple of years ago. She stopped, shyly, and asked, "Are you Dave Hingsburger?" A few minutes later, we were in conversation. She knew I was in town from reading this blog, she had been reading since near the beginning, she never comments because she's shy of the computer and shy in interacting with others on line. Her middle son had just finished school and was working part time and attending a day programme part time. She had three children, two without disabilities, the middle boy was born with Down Syndrome. We chatted and we struck up an acquaintance that was marked by the occasional email and the less occasional phone call.
A while back, she'd called and was excited, upset, worried, anxious and hopeful all at the same time. We'd often joked about how parents of kids with disabilities had to get used to conflicting emotions or they'd just simply burst. Her son had met a young woman at the sheltered industry and had wanted to start dating her. She'd always been wary of her son's sexual maturity and his interest in various aspects of the female body. This was something that she thought she'd never have to deal with, being told, like many parents are told, by doctors early on in his life, that he's never grow up, never graduate, never marry. Doctors still think that children with disabilities live in 'never land'. So she'd put that all aside.
That first day we met she told me that one of my early books on sexuality, long out of print, had made her think twice about the issue and she wondered if her son would ever love and marry. The idea terrified her as much as it excited her. To know that he was loved and would be loved, gave her as much comfort as it did anxiety. Again, for parents of kids with disabilities, the conflict between hope and fear is part of the mix. Then, on maybe our second phone call, she told me about her son meeting this woman at the work shop. Her first impulse was to tell him that he was too young, that it wasn't a good idea, that he should have a job first. Her first thought was to put barriers and opposition in his way. Her second thought was to give me a call.
We chatted through the whole thing and she said, at the end of the call, that she knew before calling, that I'd say that her son needed to be given the opportunity to date and to even have the experience of love, should love come. I said that if she knew that before she called, then she was calling for affirmation not information and she laughed and agreed. She stepped out of his way. Her son went on a date. He fell in love. They became engaged. All was proceeding as if planned in a meeting by social workers. Everyone was on board and all were supportive of the relationship and the couple. (It sometimes seems to me that people with disabilities have so many people watching their lives, involved in the decisions being made, that it's almost, kind of, yucky.)
The call that came to me came because she, for some reason no one knows, broke off the engagement and has demanded never to see him again. He was devastated. He doesn't know why. He's crying all the time. Though he still makes it to work, he loves his job, he is listless at the day programme and inconsolable at home. He keeps saying, 'She broke my heart, mom, she broke my heart'. She called me to tell me that these ideas that people with intellectual disabilities could handle relationships were simply wrong headed, her boy was really, really, hurt. I tried saying, to no effect, that she was giving to disability what didn't belong to disability. Men and women break up, get hurt, cry themselves to sleep all the time, primarily because relationships are messy. They don't run a course established by a team and they are never pre approved by programme managers. They have their own life, an internal life, that no one knows, no one sees, and are often confusing for the two involved. That's life. That's all. It isn't about disability, it's about living.
The phone went down.
I felt terrible for her and I wanted to feel terrible for him. But I couldn't. When I first, all those years ago, began writing about and speaking about and advocating for the rights of people with disabilities to love and to be in relationships, I knew that I was really promoting the idea of people being included in life's richness. I knew that life's banquet offers both the bitter and the sweet. I was never naive enough to believe that people with disabilities would have magical 'elfin' relationships that were sprinkled by fairy dust and blessed by leprechauns. No, I knew that the relationships would be messy and that the wrong people would fall in love with the wrong people and that the heart would want what the head advised against and that there would be pain and there would be joy. I never expected less. And part of me was glad that he'd loved so much that it hurt, really hurt, when it ended. Love that passes without leaving a bruise wasn't love at all.
I write this blog today months and months after that phone call. You'd guess that I'd never write something with this kind of specificity without permission and that if I got permission we must have talked again. And, of course, we did. Her son is doing better, in fact he's spotted another young woman that he's interested in and is considering asking her out. His former fiance is now dating the workshop's 'bad boy' who apparently is only attracted to women who are dating other guys. Mother called and apologized, she said she'd been really upset seeing her son so hurt. She said that when he was born she worried about his heart, she says that now she realizes that she'll worry about his heart for the rest of his life. It surprised her that her son made it through the grief and the heartbreak. It surprised her that he was willing to give love a go again. It surprised her even more, that she didn't even think of opposing it this, maybe the second time.
We agreed that we were both old enough, though she is much younger than I, to know that life will happen the way it will happen. She can't script his future - something that still surprises her, being told his life story by doctors when he was born. He lives the life of an adult because, and only because, she allowed herself to be the mother of an adult. He's lucky in that.
This post is posted late today because I sent it to her last night for approval before publishing it. I had the approval in my mailbox this morning. So, here it is.
The story of a heart broken.
And a celebration of the fact that sometimes the trite is true: it is better to have loved and lost than to never have loved at all.
No, do not concede the point. You are so right. I think we moms of kids with cognitive disabilities have to fight overprotection mode constantly - and some just live in overprotection mode because that's where they're comfortable, I guess.
I know I catch myself at it - when should I let go, when do I rein in. They're tough and really daily decisions we have to make. We have to allow our kids to fail, allow our kids to hurt - just like any other child.
And I love this statement: "It sometimes seems to me that people with disabilities have so many people watching their lives, involved in the decisions being made, that it's almost, kind of, yucky."
Amen to that.
Kudos to this mom for letting her son have these experiences. I know it's not easy, but life isn't always easy, is it?
My daughter is only 6 months old, and since my husband says she can't date until she is 30, we have time before worrying about heartbreak. And I'm sure the first time her heart is broken, I'll be crying alongside her. But I also hope that, despite having Down syndrome, Ellie will grow up to marry an amazing man of her choosing (as much as my husband may want to choose for her) and, with support, live an independent life.
Thank you Dave.
I love this post, Dave.
My daughter with Down Syndrome is 10 and talks about getting married and drinking coffee (because only adults drink coffee).
I truly hope her wish comes true and I expect it will one day.
Thanks to you and the mom for this post. And I applaud this mom - when you have had to fight so hard for your child and you have seen the bullying and prejudice happen to him, it is incredibly hard to get out of the way and let him live his life. She must be a good parent because he had what he needed to pick himself up from heartbreak and get on with life.
"My daughter is only 6 months old, and since my husband says she can't date until she is 30,"
Is this supposed to be a joke? Please tell me it's a joke. (and if it is a joke you don't need to apologize to me but considering the discussion at hand you can maybe see why I didn't laugh)
Ditto to Tony. Sometimes these things don't come across well without facial expression and tone of voice. Mind you, having said that, my Dad didn't want me to date till I was 30 either. I married at 19 and divorced three years later........
I would imagine it is a joke! and that it is just a very common thing for dads of daughters to say/feel (to some extent) rather than anything to do with her having downs syndrome.
Like this post Dave, and good on the mum for understanding the importance of the experience, despite it being difficult for her (although not sure I quite agree that if it doesn't leave a bruise it's not love.)
I saw it as a joke too, Mike says that about Ruby and Sadie, I like that Team Lando's husband said this it means something powerful, that he sees his daughter as attractive and desireable and that men would want to 'be with her' ... and as her dad he's on guard. I didn't see the whole tone of the comment as being negative at all. Here's to parents seeing their kids with disabilities as being beautiful and desireable!!
Wow Dave that is my favourite post to date!! Love is not an exclusive club accessible only to the "typical" person - it is available to anyone who is willing to share their heart. Yes it hearts a lot when someone breaks it; that is part of life - and life is all the better for it!! Giving your heart and NOT having it broken.... well that is truely magic!!!
The start of this post captured so well the duplicity of parent's feelings. A tremendous story. Thanks.
Awesome post, Dave. Thank you.
I loved this post, Dave. I have as much hope for my son to marry as I would if he didn't have his disability. But I know it's going to be hard for me to let him experience it on his own. Thanks so much for sharing this mother's story, it helps me realize that my protective instincts might come out at first, but if I sit & think about what's best for him I'll do the right thing in the end.
What a fantastic story - well done to the mom and to you.
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