He Has No Shame… So Why Do I?


Sometimes I keep Owen hidden – or at least I worry that I do.

Sometimes I feel like I’m parading him around – or at least I’m concerned that I do.

It is hard to know the reasons or motives or emotions behind so many of the choices I make these days.  There are so many layers, so many choices, people impacted in every moment of every day.

Sometimes I feel like I need to keep him away from it all – for him?  For me?  For them? I know he doesn’t understand it – he isn’t even close to being perceptive like that – when people stare at him with empathy, or at me with sympathy, or at both of us with annoyance at his outbursts, disturbances, grunting and crying and incoherent babbling.

But I am.  And I know that sometimes my perceptive little girl is.  And it hurts.  And sometimes I’m embarrassed.  And it’s hard to say that – even here.  I’m ashamed to admit that sometimes I’m embarrassed by my boy.  As I should be.  Because that’s a horrible thing to admit.  And an even worse thing to feel.

And sometimes, sometimes it’s something of a relief to prove to people just how hard this is.  To show them that I’m not just over-dramatically whining, that I’m not unnecessarily all “woe is me” or “woe is he” about all of this that we have going on – that this is all real, and complex, and not at all what people expect it to be – what they expect him to be.

But still – who is embarrassed by their child?  What kind of mother feels that way?

Sometimes, this kind.

Sometimes I want to make him wear a shirt that says “Give me a break – I had a stroke.”

Sometimes I want to make him wear a shirt that says “Give me (and my mom) a break – I had a stroke.”

Like on one of those (few) occasions that I built up the courage to take him to music class and that mother hopefully questioned whether or not he was “usually like that”… Lady – you spent 45 precious minutes with him.  I get him the other six days, 23 hours and fifteen minutes each week.  You’ll be okay.  Thank your lucky stars.

But maybe I should thank mine.

Because I have him to teach me these lessons that she has not had to learn.  Lessons that are incredibly hard and make me go on soul-search expeditions like this, but allow me to find places within myself that I never knew existed.  Owen has made me tap into depths of myself – of my heart – that took me from that intolerant woman who could barely make it through under an hour merely in the same room with a child like him, to the person who was responsible for him 24 hours a day for the past three and a half years.  I can’t pretend that I have been tolerant for all of it, but I won’t pretend that I ever wished for a different child.

He has changed me.  Perhaps this is all part of the circuitous route that we find throughout our lives.  We begin and end in diapers.  We begin and end with needing people to help us walk, bathe us, feed us, take care of us… Having Owen taught me – is still teaching me – to be a better person, to be a more whole person.  To be patient, and tolerant, and to love unconditionally.

These are lessons I desperately needed to learn – that I am still learning – so I can pass them onto him.

I am learning from him so that I can teach to him. 

And maybe the fact that he’s not embarrassed by his grunting, by his screaming out in frustration when we don’t understand him, by him always being “like that” – is where I need to begin.  His lack of perception is a weakness, but also something of a gift.  Because he is who he is.  And he has no choice but to present himself to us “as-is” and hope that we will hold his hand, teach him, accept him and love him.

And I do.

And I am still learning how to do it with grace.  And he is teaching me.


  1. says

    This is a beautifully written post and hits close to home. My son uses a wheelchair and although our diagnosis is different I feel the same way sometimes. Awkward and embarrassed by some aspects of his care and how it might make other’s feel (suctioning a trach is, after all, very unpleasant to listen to at the library!). I so appreciate your honest words and your son is a cutie!

    • says

      Thank you, Mary. I took a look at your blog, and aside from the obvious beauty there, I saw honesty and optimism as well. I am always struck by how quickly our emotions can vacillate – one way or the other – after seeing the circumstances of another. Thank you so much for sharing here (and you’ve gained another IG follower!)… J.

  2. says

    This is so lovely. I just wrote last night about what we can learn from our children adn concluded that we are all learning AND teaching, if we remain open and honest. Obviously I am not trying to say I know what your road is like, because I don’t (none of us do about anyone else, do we!?) but I love what you say here – even the shame and embarrassment you admit is full of love. xox

    • says

      I just went back and read your article, Lindsey. I am constantly inspired by your ability to take even the smallest moments and put them under a microscope to examine them more carefully – ensuring that you haven’t missed a detail. It is a quality that I love about you and so hope to emulate. Thank you, my friend, for reminding me of the importance of seeing the trees from the forest, rather than the opposite… xoxo

  3. says

    Here via Love that Max. I understand how you feel, in a way. I have embarrassed my own parents and sister many times with my behavior. I remembe rone day when I was like 14, having a meltdown in the library and y mother said she was ashamed. I understood, but I wasn’t willfully having that meltdown.

    • says

      Thank you so much for sharing here, Astrid. I appreciate the courage that it takes to share your story, and am positive that neither you nor Owen have ever willfully tried to embarrass or shame us as your parents. It is all just a part of the complex and muddy world we all live in. Again, thank you for sharing here and I wish you and your family all the best… J.

  4. says

    I don’t even know what to say. This post and just about all of your posts hit me right in the heart. I am totally there with you, I get it. You write so honestly and beautifully. Thank you for sharing.

  5. says

    I felt these same feelings in overwhelming ways especially when my now 17yo daughter with moderate cerebral palsy was younger. There are still moments (like Saturday night at an outdoor movie when she tripped and fell over the blanket we were sitting on — everyone stared and I felt like everyone was carefully evaluating every nuance of my response to her fall). But, they are fewer and farther between. Nobody talks about the shame we feel with our kiddos. Thank you for articulating it so beautifully!

  6. says

    So beautifully written! The other day a dear friend balked at carrying around my 9-year-old’s stuffed toy while the 9-year-old was elsewhere. I get it — every time it happens to me I think, ‘I must look pretty silly carrying this stuffed toy.’ But the stuffed toy is the teeniest tiniest dot at the tip of a very enormous (how do you like that eloquence?!) iceberg. Parenting brings out vast swathes of shame for me. Shame in my mothering and embarrassment about my daughter’s behaviour dog me every day. I consider it a worthy task to battle it. Shame and embarrassment come from expectations, and what do expectations have to do with reality? and with loving? and with being present with who my child and I really are? I suppose the shame and embarrassment are painful enough that I stop and think, wait a minute, is this an expectation I choose to live up to, or this one I can quietly drop or loudly fight?

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