“Will you feel the loss of a mother who couldn’t ___? Will you remember Sunday morning doughnuts in bed – my reverence and wonder in your mere existence…”
As a mum who has become disabled relatively recently, I am deep in the depths of processing these sorts of thoughts.
Thank you so much for articulating all this so beautifully here, and helping me ponder some more what my daughter’s story will be, and how it will be different from mine.
Oof, they're hard questions to ask, tugging directly on tender hopes and fears. And sometimes I feel like I'm breaking some kind of rule by asking them at all. But I do think (most of the time?) there is something useful about speaking the unspeakable -- taking it out of our brains and putting it into these little words we can look at together. I appreciate knowing you're right here processing, too💛
I love the question you leave us with...to take it in a different direction, I was recently thinking about how my relationship to language and identity is so different from my parents AND my children. My parents where first generation immigrants who experienced the pains of racism and distance from home. Passing her language to me was a must for my mother, and it came with a side of "we are not from here". I grew up with a split sense of identity, and yet I realize my kids will never feel "not from here". Their cultural identity is uncomplicated, they won't feel the need to hide their accent or defend their roots. Such a different story. Yet reading your essay I can't help but think what a gift that one day your son will read (parts of) your story, and hear more from you. Even if our stories are different between generations, it's the telling and the listening that brings us together and helps us understand the full lineage, pain and beauty, that passes on...
Yes, oh, I love this. You are getting so deeply into these questions I've been asking about overlapping and separating identities, but from this entirely different angle, and I'm so interested in the insights you have from your particular perch. The ways you are different from both your parents and your children -- you express so beautifully the distances between these stories, but also the links between them. These words in particular -- "Even if our stories are different between generations, it's the telling and the listening that brings us together and helps us understand the full lineage, pain and beauty, that passes on..." You leave such generous room for the individual within a larger whole. I'm so grateful to have this image in my head now. Thank you so much for sharing this here💛
As always, your words are meaningful and so grace-full for your fellow humans. I am not a parent, so can’t speak to that exact experience, but I think a lot about the ways we decide who “gets” to do things or not. And the truth is, so much of that is still stuck in the “isms” our society has set up-ableism, sexism, racism, etc. Like you said, there is often a false correlation made: this child has issues because their parent is disabled. That company failed because it was run by a woman. Completely ignoring the fact that thousands of companies fail that men run, that children of parents without disabilities grow up to struggle too for all sorts of reasons. Not to mention, as you said, all the ways in which our society is specifically set up to make life harder for everyone living in those margins. I am not a mother, but I am a daughter, and I can say that while my parents gave me quite a lot of trauma, they also taught me to laugh in the hard times, find joy in small things, be empathetic toward my fellow humans, and be a life-long learner. I am incredibly grateful for that, and for the ways those things have carried me through and helped me to find meaning and hope in my life. I know you’re giving your child the necessary tools to navigate this big, wild world too <3
Oh, Sophie. Yes! Thank you so much for processing this with me. I love the way you pinpoint this impulse to draw false correlations -- "That company failed because it was run by a woman. Completely ignoring the fact that thousands of companies fail that men run, that children of parents without disabilities grow up to struggle too for all sorts of reasons." Exactly, exactly, thank you for articulating this exactly. It's not that I'd want to argue that all disabled parents are amazing parents or that all of the voices in that comment thread were somehow wrong when they described their experiences in their families. Of course not! And yet -- it's the oversimplification of the one to one, the direct line pointing from one cause to one effect and nothing else. The way you describe your own experience of being parented is full of dimension -- painful prickled with bright. It can be so so hard to hold onto all of that at once💛
“Thats a one dimensional drawing in a three dimensional world…” ooof. I love that way you portray all the raw and wonderful elements of this life. My daughter has a developmental disability and is non-speaking, and is unable to share what she thinks of how I write about my perspective as her parent. I hope and wish I am leading with her autonomy, but there are moments I never expected in my experience of motherhood - like the worry I have of doing right by someone I love more than anything. I have learned to follow her gaze and discover the world where she leads me, and reading your essay hit me right in the guts of a deep question - am I telling her story when I tell mine? Am I dividing our experiences meaningfully? I’m so thankful for you and all you share, it helps guide parents who have so much to think on.
What good, brave questions to be asking. I especially love the way you describe how you've "learned to follow her gaze and discover the world where she leads me." I do not know what it feels like to be you or your daughter, but what you've described here sounds like such a deep act of love for one human to offer another -- to be sought after with intention. Even more meaningful, I imagine, when the one following that gaze is that person's parent. Thank you so much for sharing this here💛
“ I hope I can create space for you to feel all of it – to name the “both” as well as the “and” of it.”
From everything I’ve learned about you Rebeka, you do this a thousand-fold. Being able to straddle paradox and learn how to dance with both is a constant learning when we live in bodies that are “different”/ache/hurt/wobble/fill-in-the-blank. But this practice, for me, has been essential to a deeper sense of joy that isn’t tethered to either side. Love your writing, always.
Oh, I love the way you said that -- a deeper sense of joy that ISN'T TETHERED TO EITHER SIDE. It feels like the practice of acceptance for the totality of what is -- learning to breathe into that. Thank you for thinking this through with me and for being here, friend. I so appreciate your perspective/voice in my world💛
I once thanked a friend for being flexible and accommodating about my illness and disability. He said “That’s surface level stuff. I see deeper. I see you. And that’s just a part of hanging out with you.” I’ve never forgotten it.
My daughter has an intellectual disability, which doesn’t allow her the ability to tell me what she thinks of the way I tell my story of being her parent. This means when I tell my story I also have to consider what it would feel like to be her hearing it. I want to always listen to and read what I say and write as if I am her listening and reading it, but of course I can’t do that in a true, authentic way and I’m not sure I’m getting even close to being as critical as I would be as my own 14 year old daughter. I read your piece and imagine what she would write if she could about how her story and mine are not the same. That’s a very good thought exercise that I’m going to chew on for a while…🤔
I really appreciate how thoughtful and careful you are being about the way you tell your own story as a parent -- even just how aware you are that you and your daughter have separate stories and distinct POVs. I talk with a lot of parents of children with disabilities, and I can't even tell you how often this doesn't seem to even occur to a parent. But this act of making space for her separate story, acknowledging her experience is different than yours -- even when she can't tell you with words what that story is, even when you have no real way of making a guess -- feels like such a tangible act of love and care. There is so much dignity infused in that practice. Thank you for thinking this through with me, and for being here!💛
“Will you feel the loss of a mother who couldn’t ___? Will you remember Sunday morning doughnuts in bed – my reverence and wonder in your mere existence…”
As a mum who has become disabled relatively recently, I am deep in the depths of processing these sorts of thoughts.
Thank you so much for articulating all this so beautifully here, and helping me ponder some more what my daughter’s story will be, and how it will be different from mine.
💕
Oof, they're hard questions to ask, tugging directly on tender hopes and fears. And sometimes I feel like I'm breaking some kind of rule by asking them at all. But I do think (most of the time?) there is something useful about speaking the unspeakable -- taking it out of our brains and putting it into these little words we can look at together. I appreciate knowing you're right here processing, too💛
I love the question you leave us with...to take it in a different direction, I was recently thinking about how my relationship to language and identity is so different from my parents AND my children. My parents where first generation immigrants who experienced the pains of racism and distance from home. Passing her language to me was a must for my mother, and it came with a side of "we are not from here". I grew up with a split sense of identity, and yet I realize my kids will never feel "not from here". Their cultural identity is uncomplicated, they won't feel the need to hide their accent or defend their roots. Such a different story. Yet reading your essay I can't help but think what a gift that one day your son will read (parts of) your story, and hear more from you. Even if our stories are different between generations, it's the telling and the listening that brings us together and helps us understand the full lineage, pain and beauty, that passes on...
Yes, oh, I love this. You are getting so deeply into these questions I've been asking about overlapping and separating identities, but from this entirely different angle, and I'm so interested in the insights you have from your particular perch. The ways you are different from both your parents and your children -- you express so beautifully the distances between these stories, but also the links between them. These words in particular -- "Even if our stories are different between generations, it's the telling and the listening that brings us together and helps us understand the full lineage, pain and beauty, that passes on..." You leave such generous room for the individual within a larger whole. I'm so grateful to have this image in my head now. Thank you so much for sharing this here💛
As always, your words are meaningful and so grace-full for your fellow humans. I am not a parent, so can’t speak to that exact experience, but I think a lot about the ways we decide who “gets” to do things or not. And the truth is, so much of that is still stuck in the “isms” our society has set up-ableism, sexism, racism, etc. Like you said, there is often a false correlation made: this child has issues because their parent is disabled. That company failed because it was run by a woman. Completely ignoring the fact that thousands of companies fail that men run, that children of parents without disabilities grow up to struggle too for all sorts of reasons. Not to mention, as you said, all the ways in which our society is specifically set up to make life harder for everyone living in those margins. I am not a mother, but I am a daughter, and I can say that while my parents gave me quite a lot of trauma, they also taught me to laugh in the hard times, find joy in small things, be empathetic toward my fellow humans, and be a life-long learner. I am incredibly grateful for that, and for the ways those things have carried me through and helped me to find meaning and hope in my life. I know you’re giving your child the necessary tools to navigate this big, wild world too <3
Oh, Sophie. Yes! Thank you so much for processing this with me. I love the way you pinpoint this impulse to draw false correlations -- "That company failed because it was run by a woman. Completely ignoring the fact that thousands of companies fail that men run, that children of parents without disabilities grow up to struggle too for all sorts of reasons." Exactly, exactly, thank you for articulating this exactly. It's not that I'd want to argue that all disabled parents are amazing parents or that all of the voices in that comment thread were somehow wrong when they described their experiences in their families. Of course not! And yet -- it's the oversimplification of the one to one, the direct line pointing from one cause to one effect and nothing else. The way you describe your own experience of being parented is full of dimension -- painful prickled with bright. It can be so so hard to hold onto all of that at once💛
Beautifully said. Queuing up that podcast immediately 💞
Ahh, Lindsey! That means so much. Thank you! I hope you enjoy it!💛
“Thats a one dimensional drawing in a three dimensional world…” ooof. I love that way you portray all the raw and wonderful elements of this life. My daughter has a developmental disability and is non-speaking, and is unable to share what she thinks of how I write about my perspective as her parent. I hope and wish I am leading with her autonomy, but there are moments I never expected in my experience of motherhood - like the worry I have of doing right by someone I love more than anything. I have learned to follow her gaze and discover the world where she leads me, and reading your essay hit me right in the guts of a deep question - am I telling her story when I tell mine? Am I dividing our experiences meaningfully? I’m so thankful for you and all you share, it helps guide parents who have so much to think on.
What good, brave questions to be asking. I especially love the way you describe how you've "learned to follow her gaze and discover the world where she leads me." I do not know what it feels like to be you or your daughter, but what you've described here sounds like such a deep act of love for one human to offer another -- to be sought after with intention. Even more meaningful, I imagine, when the one following that gaze is that person's parent. Thank you so much for sharing this here💛
“ I hope I can create space for you to feel all of it – to name the “both” as well as the “and” of it.”
From everything I’ve learned about you Rebeka, you do this a thousand-fold. Being able to straddle paradox and learn how to dance with both is a constant learning when we live in bodies that are “different”/ache/hurt/wobble/fill-in-the-blank. But this practice, for me, has been essential to a deeper sense of joy that isn’t tethered to either side. Love your writing, always.
Oh, I love the way you said that -- a deeper sense of joy that ISN'T TETHERED TO EITHER SIDE. It feels like the practice of acceptance for the totality of what is -- learning to breathe into that. Thank you for thinking this through with me and for being here, friend. I so appreciate your perspective/voice in my world💛
And yours in mine!
I once thanked a friend for being flexible and accommodating about my illness and disability. He said “That’s surface level stuff. I see deeper. I see you. And that’s just a part of hanging out with you.” I’ve never forgotten it.
What a beautiful thing to say ❤️🩹
Ahh, I love this. A friend who is able to let his world expand to meet you in your world💛
My daughter has an intellectual disability, which doesn’t allow her the ability to tell me what she thinks of the way I tell my story of being her parent. This means when I tell my story I also have to consider what it would feel like to be her hearing it. I want to always listen to and read what I say and write as if I am her listening and reading it, but of course I can’t do that in a true, authentic way and I’m not sure I’m getting even close to being as critical as I would be as my own 14 year old daughter. I read your piece and imagine what she would write if she could about how her story and mine are not the same. That’s a very good thought exercise that I’m going to chew on for a while…🤔
I really appreciate how thoughtful and careful you are being about the way you tell your own story as a parent -- even just how aware you are that you and your daughter have separate stories and distinct POVs. I talk with a lot of parents of children with disabilities, and I can't even tell you how often this doesn't seem to even occur to a parent. But this act of making space for her separate story, acknowledging her experience is different than yours -- even when she can't tell you with words what that story is, even when you have no real way of making a guess -- feels like such a tangible act of love and care. There is so much dignity infused in that practice. Thank you for thinking this through with me, and for being here!💛