“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.
“ 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!💛
“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.
“ 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.
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!💛