The photos are so cute Your writing is so beautiful and impactful I love it so much I have started writing my own book because of it. I have started to memorize it to because I have listened to it so many times now
I will want to show you my book when you come! I CANNOT WAIT I HAVE BEEN COUNTING DOWN THE DAYS. I found out the date you are coming from Ashley Shew because we have been emailing. Because Mrs. Harwood one of my special education assistants (SEAs) husband used to work with her and I got an email forwarded to me from her.
I am just so glad for your writing. Ugh, the photo of you & your mom. Then little-you and mom-you both being present in those hard moments. I wrote so much when my child was born and then her care took more of my time/attention - now I see myself in that photo of your mom, looking off in a completely different direction and wondering what my child is thinking about her own journey, how she will make meaning of this season of our life together, how she will grow to inhabit her own story. Thank you for this piece and your thoughtful questions. 💕
Friend! I'm so glad to see your name pop up here. I love the way you describe this -- "I see myself in that photo of your mom, looking off in a completely different direction and wondering what my child is thinking about her own journey, how she will make meaning of this season of our life together, how she will grow to inhabit her own story." It makes me picture a tangle of roads, some overlapping and some diverging, which resonates hard in my own experience as a child and parent. Thank you for being here!!💕💕
Ahh, yay! I really enjoy being able to include that texture to the creative expression. Plus, more points of access! I love it when it works out as a win on top of a win :) :) Thanks, for listening!
You write with insight and courage. You ask challenging questions and give thought-provoking answers. Thank you.
Right now, I'm reflecting on my parents. At the age of almost 6 years old, I was diagnosed with a bone disease. The disease resolved, and I had no serious physical aftereffects. However, the treatment was traumatic and scarred me emotionally. My parents had to take care of this confused, scared child who had just started 1st grade and now was home-schooled for a year. (A teacher from the public schools visited several times a week to evaluate my progress, provide lessons to Mom to teach me, and so on.) Mom was an RN. When I was a young adult, I asked her about some of the details I was unsure about. Mom could not talk about that time. The time was painful for Dad, too.
Probably caused in part by that time, I developed a stutter. An octogenarian, I still stutter, and it has increased the last 5 years. My disabilities largely have been invisible. It is hard to balance "It is serious and impacts me" with "It's not nearly as difficult as what _____ contends with." It is an important and healing balance for me to ponder.
Thank you so much for sharing these bits of your story, Mike. The way you describe your early experience and aftermath of this bone disease (and by extension, your parents' experiences of these years), makes me think about the weight that comes from unspeakable stories. Silencing a story has to be a survival tool, too, I would think. And also, it makes me wonder about the cost of implementing that tool. Especially over time. I'm picturing little you (just starting 1st grade!!) trying to make sense of what had just happened to you. It stands out to me that you noted up top that you had no serious physical aftereffects. I wonder if that detail became a part of the story/framework you had to understand yourself? (Maybe it became a part of your parents' story as well?) And how confusing it would be to have a story that implies you're essentially fine, when maybe you didn't feel fine? Of course, I don't know. And this is very much your story and not mine! I do appreciate your willingness to think this through with me -- to dig into impossible questions together.
So complicated! I want to read those honest stories too, but when do elements of writing them become not just our stories to tell? And now I have the added complication of my daughter being a teenager! She even made me take down an Instagram post of her and me where she already had her face covered recently! I shall continue ponder this, and feel the conflict. If I do publish this post I think it will be next year now when I have the headspace for it, as i know the emotional investment will be high. But I will be sure to remember let you know. Look forward to reading more of your work, and seeing how you continue to navigate it all 💛
It's so so hard to know where that line is! It's interesting to me that your daughter is a teenager -- on the one hand, she's able to tell you what she does/doesn't feel comfortable with you sharing (and she seems to be comfortable letting you know where that line is -- so useful!) And also, I don't know that I would trust MY teenage self to have made the best decision on my behalf at that age! One thing I've tried to do in my own writing about parenting is focus on my experience as a mother, trying my best to refrain from speaking for Otto or pretending I understand his experience. But even that can be blurry. I've struggled with writing about other people before, but writing about your own child is next level! It's so easy for me to blur the line between us -- where he begins and I end. But I think it's important practice beyond just the writing. So I'm working on it. Alongside you! And yes -- if/when you do end up publishing this piece, I will be so eager to read it <3
Yes useful I can ask her and I will share what I’m writing with her before publishing but in this new teenage territory she’s also often totally uninterested in me these days (imagine!?) and so it can be hard to glean an opinion through conversation. And I’m more likely to get a knee jerk reaction to something (like the photo). But I agree with you, focussing on my experience as a mum rather than assuming I know what she’s thinking/feeling, which applies to life too, is the path to go down. A lot of “I’m wondering ifs ?). I’m glad to be exploring this alongside you. And I realise as I write this that it now feels a little less weighty knowing that I’m not thinking about it alone, so I’m very grateful to you for being here. 💕
Thank you for this beautiful post Rebekah. My experience is different from yours in that I became disabled much later in life. But I feel the tangle of motherhood, illness and disability and everything that comes along with it. And this “I want to be careful with our stories – mindful of the stories that are for the public and the stories that are just for me, my son, my partner – mindful of the gap between my stories and their stories – curious about the moments when we are looking in different directions.” Yes! My daughter has featured in snippets in some of my writing but I’m working on a future piece about being a parent with MS and am so mindful of this that I fear I may not even publish it! 💛
Oh, that tension is so fraught!! I think about this all the time. I've also felt myself feeling so cautious and holding back a lot of writing that involves my son. Which I feel conflict around! I want to honor his individuality and protect him from the scrutiny of an audience, and also, I feel so hungry for honest stories of disability and parenting myself and see value in putting these stories into the greater canon of stories. Reading your comment here, my first thought was -- oh, I want to read that essay!! But I know it's so complicated. If you do end up publishing it, I will leap at the chance to read it❤️
“Can we stay tethered to the full range of the beauty and tenderness and terror coursing through this place? Can our stories swaddle us – and also unfurl like a never-ending red carpet that disappears into the horizon? I want to figure out how to tell that kind of story.” So beautiful. And so lovely to see you here.
Oh! I am clutching your words and stories and big feelings to my heart. I have been thinking a lot in the past few years about the tangle of trauma and grief and gratitude. How I ache for what could have been, while also seeing how it shaped me in ways I’m grateful for, while also hating the ways it shaped me…and around and around we go. How do I step outside the “inspiration” narrative, and the “everything happens for a reason” narrative, while not getting consumed by anger and loss? I think there are so many big feelings that I avoid in order to “stay positive” and this essay has me thinking about that again, has me wanting to work on the push and pull of emotions, of letting them ebb and flow and knowing they won’t wholly consume me if I do so. I am thinking already about your questions at the end too, and feeling a great tug to explore it all more. Thank you for being here. Thank you for exploring deeply and inviting us to do the same <3
Ohhhh, yes. Yes and yes. That impossible loop -- ache for what could have been, gratitude for what was, hating what was -- can spin in my brain like a blender about to overheat. I've been thinking so much lately about the tangible, profound power storytelling has over our experience of the thing -- the ways a cliche can actually keep us afloat to get to the other side of a crisis (How frustrating! I hate cliches, haha!), and also, the way ignoring pain usually doesn't make that pain disappear. Why is it so so hard to tell a story that holds us up and also lets us fall apart? Anyhow, thank you for thinking this through with me. For feeling it with me. I can feel pretty isolated with my swirling-like-a-blender brain. And it feels really nice to know there's another human trying to hold onto/bear witness to the push & pull, ebb & flow of it all <3
Oh my, this post hit hard. I too had a rough early few years resulting in a lifetime of physical disability. When I turned the age my mom was when I got sick, it was a mind fuck. How did she cope with having a child taken from her arms not knowing if she would live or die? When my son turned 2 - the age I was when I got sick - it was an even bigger mind fuck. How could I survive him being taken away for me for months? How could he survive being yanked from his mother's arms and put in isolation and later into a huge ward of crying kids? I SO get the need to be smiling and cute through the pain. I certainly got more positive attention from being cute. It was an early lesson that in many ways served me well, but not always later in life as it negated the pain and sadness I felt internally. In my childhood, my story of being sick was not told. My disability was not exactly ignored, but no one would talk about the months of hospitalization, how we coped with the many surgeries, being different in a setting of ability.
Your writing is honest, brutal and necessary. I don't have your gift of words or storytelling, but I can tell you it rings true and is SO important and I thank you. I think you are in Kansas City - my home in medical school (can't keep a determined woman back) and I miss it. Many thanks to you and your bad-assery.
Thank you so much for taking the time to read and share these bits of your own story. I don't meet too many people with this particular intersections of life experiences! That very particular experience of being a sick child and then re-remembering/re-evaluating that experience through the lens of being a parent yourself. HOLY HOLY SHIT. And then this piece about learning so early to smile -- to be cute. The ways that tool can serve us and also harm us. I'm so deeply struck, though, reading about your experience of NOT hearing the stories of your childhood sickness told and retold. To have the stories of coping through hospitalization and surgeries almost ignored. Honestly, I've thought so much about what it's meant to my long arc to have so many stories from my early years told and retold, it's the first time I've considered what the absence of these stories would feel like. And this is kind of blowing my mind in the best way. I will be chewing on this. Thank you, thank you -- for being here and thinking this through with me. I appreciate it/you so much <3
When I first read your book, I was in awe of how you could tell my story so well despite having different bodies and being vastly different ages. You helped me look at a lot of things and deal with things I hadn't dealt with. I'm grateful. I have not met many people who have walked our path and it's good to know you're out there. Keep writing. Keep loving that boy of yours. My boy (31 now!!) learned a lot living with a disabled mom and I like to think his kind heart is partly a result of that. Linda
Ahh, 31!! I am so greedy for dispatches from disabled moms further down the road than me -- every peek at the kind hearts that grew on the other side of this particular kind of mothering. Of course every family/parent/child is different, but the pictures of disability and parenting are so slim! And I appreciate this picture. And thank you for sharing your experience reading my book! It means so much to me to know that it resonated with you <3
I’m dressing up as you for Halloween.
I can tell what you’re going to say before you even say it because I have listened to this So many times I am even saying it at the same time as you
I will want to show you my book when you come
The photos are so cute Your writing is so beautiful and impactful I love it so much I have started writing my own book because of it. I have started to memorize it to because I have listened to it so many times now
Okay, nothing makes me happier than knowing this writing inspired you in your own writing! YES and YAY! Cheering you on from over here!
I will want to show you my book when you come! I CANNOT WAIT I HAVE BEEN COUNTING DOWN THE DAYS. I found out the date you are coming from Ashley Shew because we have been emailing. Because Mrs. Harwood one of my special education assistants (SEAs) husband used to work with her and I got an email forwarded to me from her.
I am just so glad for your writing. Ugh, the photo of you & your mom. Then little-you and mom-you both being present in those hard moments. I wrote so much when my child was born and then her care took more of my time/attention - now I see myself in that photo of your mom, looking off in a completely different direction and wondering what my child is thinking about her own journey, how she will make meaning of this season of our life together, how she will grow to inhabit her own story. Thank you for this piece and your thoughtful questions. 💕
Friend! I'm so glad to see your name pop up here. I love the way you describe this -- "I see myself in that photo of your mom, looking off in a completely different direction and wondering what my child is thinking about her own journey, how she will make meaning of this season of our life together, how she will grow to inhabit her own story." It makes me picture a tangle of roads, some overlapping and some diverging, which resonates hard in my own experience as a child and parent. Thank you for being here!!💕💕
I love that I can listen to this essay recording in your own voice. Thank you.
Ahh, yay! I really enjoy being able to include that texture to the creative expression. Plus, more points of access! I love it when it works out as a win on top of a win :) :) Thanks, for listening!
You write with insight and courage. You ask challenging questions and give thought-provoking answers. Thank you.
Right now, I'm reflecting on my parents. At the age of almost 6 years old, I was diagnosed with a bone disease. The disease resolved, and I had no serious physical aftereffects. However, the treatment was traumatic and scarred me emotionally. My parents had to take care of this confused, scared child who had just started 1st grade and now was home-schooled for a year. (A teacher from the public schools visited several times a week to evaluate my progress, provide lessons to Mom to teach me, and so on.) Mom was an RN. When I was a young adult, I asked her about some of the details I was unsure about. Mom could not talk about that time. The time was painful for Dad, too.
Probably caused in part by that time, I developed a stutter. An octogenarian, I still stutter, and it has increased the last 5 years. My disabilities largely have been invisible. It is hard to balance "It is serious and impacts me" with "It's not nearly as difficult as what _____ contends with." It is an important and healing balance for me to ponder.
Thank you so much for sharing these bits of your story, Mike. The way you describe your early experience and aftermath of this bone disease (and by extension, your parents' experiences of these years), makes me think about the weight that comes from unspeakable stories. Silencing a story has to be a survival tool, too, I would think. And also, it makes me wonder about the cost of implementing that tool. Especially over time. I'm picturing little you (just starting 1st grade!!) trying to make sense of what had just happened to you. It stands out to me that you noted up top that you had no serious physical aftereffects. I wonder if that detail became a part of the story/framework you had to understand yourself? (Maybe it became a part of your parents' story as well?) And how confusing it would be to have a story that implies you're essentially fine, when maybe you didn't feel fine? Of course, I don't know. And this is very much your story and not mine! I do appreciate your willingness to think this through with me -- to dig into impossible questions together.
So complicated! I want to read those honest stories too, but when do elements of writing them become not just our stories to tell? And now I have the added complication of my daughter being a teenager! She even made me take down an Instagram post of her and me where she already had her face covered recently! I shall continue ponder this, and feel the conflict. If I do publish this post I think it will be next year now when I have the headspace for it, as i know the emotional investment will be high. But I will be sure to remember let you know. Look forward to reading more of your work, and seeing how you continue to navigate it all 💛
It's so so hard to know where that line is! It's interesting to me that your daughter is a teenager -- on the one hand, she's able to tell you what she does/doesn't feel comfortable with you sharing (and she seems to be comfortable letting you know where that line is -- so useful!) And also, I don't know that I would trust MY teenage self to have made the best decision on my behalf at that age! One thing I've tried to do in my own writing about parenting is focus on my experience as a mother, trying my best to refrain from speaking for Otto or pretending I understand his experience. But even that can be blurry. I've struggled with writing about other people before, but writing about your own child is next level! It's so easy for me to blur the line between us -- where he begins and I end. But I think it's important practice beyond just the writing. So I'm working on it. Alongside you! And yes -- if/when you do end up publishing this piece, I will be so eager to read it <3
Yes useful I can ask her and I will share what I’m writing with her before publishing but in this new teenage territory she’s also often totally uninterested in me these days (imagine!?) and so it can be hard to glean an opinion through conversation. And I’m more likely to get a knee jerk reaction to something (like the photo). But I agree with you, focussing on my experience as a mum rather than assuming I know what she’s thinking/feeling, which applies to life too, is the path to go down. A lot of “I’m wondering ifs ?). I’m glad to be exploring this alongside you. And I realise as I write this that it now feels a little less weighty knowing that I’m not thinking about it alone, so I’m very grateful to you for being here. 💕
Thank you for this beautiful post Rebekah. My experience is different from yours in that I became disabled much later in life. But I feel the tangle of motherhood, illness and disability and everything that comes along with it. And this “I want to be careful with our stories – mindful of the stories that are for the public and the stories that are just for me, my son, my partner – mindful of the gap between my stories and their stories – curious about the moments when we are looking in different directions.” Yes! My daughter has featured in snippets in some of my writing but I’m working on a future piece about being a parent with MS and am so mindful of this that I fear I may not even publish it! 💛
Oh, that tension is so fraught!! I think about this all the time. I've also felt myself feeling so cautious and holding back a lot of writing that involves my son. Which I feel conflict around! I want to honor his individuality and protect him from the scrutiny of an audience, and also, I feel so hungry for honest stories of disability and parenting myself and see value in putting these stories into the greater canon of stories. Reading your comment here, my first thought was -- oh, I want to read that essay!! But I know it's so complicated. If you do end up publishing it, I will leap at the chance to read it❤️
“Can we stay tethered to the full range of the beauty and tenderness and terror coursing through this place? Can our stories swaddle us – and also unfurl like a never-ending red carpet that disappears into the horizon? I want to figure out how to tell that kind of story.” So beautiful. And so lovely to see you here.
Friend! I'm so happy to see you here!❤️
"I’d played my part perfectly – the angelic sufferer, the saintly sick kid. Audiences would love it."
Oof.
Thanks again Rebekah for writing something that punches me in the gut in the most brilliant way possible. - an old friend ❤️
❤️❤️❤️
Oh! I am clutching your words and stories and big feelings to my heart. I have been thinking a lot in the past few years about the tangle of trauma and grief and gratitude. How I ache for what could have been, while also seeing how it shaped me in ways I’m grateful for, while also hating the ways it shaped me…and around and around we go. How do I step outside the “inspiration” narrative, and the “everything happens for a reason” narrative, while not getting consumed by anger and loss? I think there are so many big feelings that I avoid in order to “stay positive” and this essay has me thinking about that again, has me wanting to work on the push and pull of emotions, of letting them ebb and flow and knowing they won’t wholly consume me if I do so. I am thinking already about your questions at the end too, and feeling a great tug to explore it all more. Thank you for being here. Thank you for exploring deeply and inviting us to do the same <3
Ohhhh, yes. Yes and yes. That impossible loop -- ache for what could have been, gratitude for what was, hating what was -- can spin in my brain like a blender about to overheat. I've been thinking so much lately about the tangible, profound power storytelling has over our experience of the thing -- the ways a cliche can actually keep us afloat to get to the other side of a crisis (How frustrating! I hate cliches, haha!), and also, the way ignoring pain usually doesn't make that pain disappear. Why is it so so hard to tell a story that holds us up and also lets us fall apart? Anyhow, thank you for thinking this through with me. For feeling it with me. I can feel pretty isolated with my swirling-like-a-blender brain. And it feels really nice to know there's another human trying to hold onto/bear witness to the push & pull, ebb & flow of it all <3
Oh my, this post hit hard. I too had a rough early few years resulting in a lifetime of physical disability. When I turned the age my mom was when I got sick, it was a mind fuck. How did she cope with having a child taken from her arms not knowing if she would live or die? When my son turned 2 - the age I was when I got sick - it was an even bigger mind fuck. How could I survive him being taken away for me for months? How could he survive being yanked from his mother's arms and put in isolation and later into a huge ward of crying kids? I SO get the need to be smiling and cute through the pain. I certainly got more positive attention from being cute. It was an early lesson that in many ways served me well, but not always later in life as it negated the pain and sadness I felt internally. In my childhood, my story of being sick was not told. My disability was not exactly ignored, but no one would talk about the months of hospitalization, how we coped with the many surgeries, being different in a setting of ability.
Your writing is honest, brutal and necessary. I don't have your gift of words or storytelling, but I can tell you it rings true and is SO important and I thank you. I think you are in Kansas City - my home in medical school (can't keep a determined woman back) and I miss it. Many thanks to you and your bad-assery.
Thank you so much for taking the time to read and share these bits of your own story. I don't meet too many people with this particular intersections of life experiences! That very particular experience of being a sick child and then re-remembering/re-evaluating that experience through the lens of being a parent yourself. HOLY HOLY SHIT. And then this piece about learning so early to smile -- to be cute. The ways that tool can serve us and also harm us. I'm so deeply struck, though, reading about your experience of NOT hearing the stories of your childhood sickness told and retold. To have the stories of coping through hospitalization and surgeries almost ignored. Honestly, I've thought so much about what it's meant to my long arc to have so many stories from my early years told and retold, it's the first time I've considered what the absence of these stories would feel like. And this is kind of blowing my mind in the best way. I will be chewing on this. Thank you, thank you -- for being here and thinking this through with me. I appreciate it/you so much <3
When I first read your book, I was in awe of how you could tell my story so well despite having different bodies and being vastly different ages. You helped me look at a lot of things and deal with things I hadn't dealt with. I'm grateful. I have not met many people who have walked our path and it's good to know you're out there. Keep writing. Keep loving that boy of yours. My boy (31 now!!) learned a lot living with a disabled mom and I like to think his kind heart is partly a result of that. Linda
Ahh, 31!! I am so greedy for dispatches from disabled moms further down the road than me -- every peek at the kind hearts that grew on the other side of this particular kind of mothering. Of course every family/parent/child is different, but the pictures of disability and parenting are so slim! And I appreciate this picture. And thank you for sharing your experience reading my book! It means so much to me to know that it resonated with you <3