Mari! Might you convince me to finally read "Far From the Tree"? I absolutely love this Solomon quote, which I believe is from the introduction, "Parenthood abruptly catapults us into a permanent relationship with a stranger." It may sound ridiculous, but so much of raising my boys has been trying to be open to seeing that they are their own people. And supporting those people as well as I can but not over-attaching, enmeshing my identity in who they are.
I am thinking of you during the heavily-interrupted newborn care phase. I remember it well. It felt huge when I squeezed my Bouncer into my Brooklyn bathroom so I could rush to shower while the baby was awake, peeking out of the shower curtain every 8 seconds. Now I'm six years out and showering does not involve any of that -- can you believe it? Everything changes. Sending love. Hope you can get some naps that are longer than an hour! (My firstborn was a strict 45 min napper for the first year of his life, though, so, I get it if you can't.) Now naps are long gone but he's a great sleeper at night! (Not the case for months 1-13). Everything changes. xoxo.
Yessss that quote really stopped me in my tracks! I'm so glad I'm reading it now because I thought I was so open-minded but I'm realizing how much potential this little baby has for threatening my ego!! Of course, everyone asks whether Mari Jr looks more like me or Mr Mari and both of us keep projecting our own selves on this innocent little face...I can only imagine the impulse gets even stronger when you start seeing their personalities! Trying very very hard to see this journey as one of discovery more than guidance, but I know that will be challenging!!
"Everything changes." Such a good reminder-- I need that tattooed on my face :)))
Thank you as always for speaking so throughly and kindly across the board! Since you’re one of my faves, I’ll give my two cents if the masses care:). While raising the sweetest kiddo with a disability and also intense medical, it is so true that the challenges are far less when you surrender anything individualist inside yourself. We couldn’t do this journey if we white knuckled it, but despite even the most connections we try to foster (mostly with family because it takes a VERY insiders view to see this kind of deep need), every day is still a lot. Most won’t know this unless they live it ;). I think we could go one step further and say that stepping inside another’s world when we think we “understand” it, would actually shock almost everyone. This is true for my situation where isolation still occurs despite my best efforts to stay connected:). It’s probably true for you in this new world you find yourself in with sweet Mari Jr. We all need each other and need deeper empathy.
I am always happy to see you in my inbox:). Still wanting to read your book- hopefully soon! Would love to keep connecting more - and I’m praying for your journey!
Oh my dear Julie, I want to hug you! Thank you sooo much for this—it’s such a gracious perspective, and you’re completely right! I can only imagine how much of the daily reality can’t be seen or understood from the outside, no matter how much empathy someone thinks they have. (My therapist just shared that the less experience someone has in a particular circumstance, the more they *think* they understand it, which is so wild--why are humans like this!)
I really appreciate you naming the isolation that can still exist even with community and surrender- I wish I had worded that section with more care toward that truth. What I was trying (gah, very clumsily!!!) to get at was how identity and expectations can shape resilience—how the stories we tell ourselves about what a “good” life or “successful” family looks like can make it harder or easier to adapt when those stories get interrupted. For people whose sense of worth is built around control (like mine so often has been!), life’s curveballs (for lack of a better euphemism) can feel like personal failures. But when identity is already built around interdependence or flexibility, change doesn’t threaten the foundation of contentment as much.
Of course, that’s very different from the *lived* experience of caring for a child with deep, ongoing needs, which I know is its own full world of challenges and love that can’t be understood from the outside. Poor example on my part! Thank you for giving this such a thoughtful read—I’ll be carrying your words with me, and thinking of you often as usual!!!
This was such a beautiful comment, you’re one of the most gracious and heart filled people I “know.” I feel like I know you and definitely think reading one’s deepest words constitutes for knowing someone :). Please don’t worry, your whole essay was beautiful, and I was thinking less of you and more to the masses when I spoke my little mama bear piece about challenges and disability . I’ve experienced so much love AND also so much broad brushing (kind of like you spoke of from what your therapist mentions… we all want to believe we know even when we don’t haha). I LOVED what you said about letting a hard thing be hard and also opening oneself up to surprises along the way. You worded that so kindly to all of us tough on ourselves people… I hope you are kind to yourself today and I will continue to carry your words with me as we enter surgery for my sweet boy tomorrow. Bless you friend.
The ideas in this book are lovely. However as a professional who has worked with families of children with disabilities for several years they read as romantic fiction or wishful thinking rather than truth. The reality for most is brutal, exhausting, isolating, frustrating and demoralising for the most part and most parents would immediately spend their first wish on their child having full health. Moreover, it hits minority and poorer families harder because it is punishingly expensive to have a child with a disability and most female carers end up sacrificing their career and social life to care for their child around the clock. Sadly these are tragic realities- the life of a parent whose child has a serious disability cannot be sugar coated or romanticised in the vast majority of cases.
You’re absolutely right to call this out, and I really appreciate you taking the time to do so. I was totally inarticulate, but I didn't intend to imply that parenting a child with a disability is anything less than profoundly difficult, or to romanticize what is, as you said, often an exhausting and isolating reality. The section of my essay that referenced Andrew Solomon’s work was an example of fixed identity vs happiness, and was meant to explore something much narrower: how parents’ *identities*—especially those built around independence, achievement, or control—can feel more destabilized when those values are disrupted, compared to those whose lives already depend on shared care or adaptability. But I can see how, without enough context, that could sound like I was minimizing the very real, ongoing challenges of disability itself.
I completely agree that there’s a real danger in over-intellectualizing or idealizing hardship, and I’ve written before about how no one should romanticize disability or suffering. It’s a tension I’m always trying to handle with more care, and your comment is such a valuable reminder to keep that balance. Thank you again for reading—and for doing the work you do with families who live this reality every day. <3
Thank you—“I used to get irritated when people around me would call me "strong" during times of tribulation, like, What is strength even doing for me?? And, furthermore, do I have a choice?”
I’ve been in this spot for awhile. I’m tired of being “strong”. What you wrote is one of the first things that captures why the platitudes can feel worse. I’m grateful to hear about your experiences and your POV.
Ugh!!! I used to literally pray "STOP MAKING ME STRONG; I'M SICK OF IT!" I actually have a tattoo devoted to this sentiment as well (a bull, because they've been made to fight but all they want to do is relax in a meadow). Hoping you can relax in your own meadow very soon xoxo
What a beautiful read! This was a what can I read now I’m randomly awake type of thing and your words resonated deeply. Speaking life fluently is such an inspiring concept. X
This is lovely and so thoughtful and inspiring! You've also tickled a few ideas, about how cultures approach "speaking life" in different ways, that will help with some worldbuilding materials I'm developing. An unexpected boon!
Mari, thank you for this. As always, you put on the page what ruminates through my mind. As a mother of two young kids, one who is neurotypical, my husband and I contain both the beauty and the struggle. It's a tender balance but one that exists for most people out there. When talking to my parents about this recently, my mother looked at me and said" We don't get to choose our cross" - which sounds harsh but is true. She lost both her parents when they were very. young and had a disabled sister herself and yet, life moves on. And we continue to find joy in those cracks. Thank you for speaking to that. Also, I am from Mexico and live in brooklyn - my first language is Spanish. I'd be happy to exchange conversational spanish hangouts with you for some creativity talks! haha
I love how you put it: CONTAIN the beauty and the struggle. I'm imagining a big painted pot of stew or flowers or something, containing all the yuck and the beauty/deliciousness at once! Your mom’s words hit hard too; they carry that tough kind of wisdom that only really lands once you’ve lived through it. God bless her!!
Also, I love the idea of a Spanish–creativity exchange! What a lovely offer! And what a fun connection between your worlds in Mexico and Brooklyn. Thank you again for reading and for sharing such thoughtful reflections--I’m really touched.
Thank you for this and your other writing! I loved your book and am passing it around. I am 71 with dwarfism. The chapter on dwarfism in Andrew Solomon's book is among the most thoughtful on the topic out there.
Jon! What a kind and uplifting comment; thank you so much for reading my book, and this!! I loved that chapter in Far From the Tree, and moved to hear that it resonated! The amount of research and empathy it took for him to write that book completely astounds me.
Mari! Might you convince me to finally read "Far From the Tree"? I absolutely love this Solomon quote, which I believe is from the introduction, "Parenthood abruptly catapults us into a permanent relationship with a stranger." It may sound ridiculous, but so much of raising my boys has been trying to be open to seeing that they are their own people. And supporting those people as well as I can but not over-attaching, enmeshing my identity in who they are.
I am thinking of you during the heavily-interrupted newborn care phase. I remember it well. It felt huge when I squeezed my Bouncer into my Brooklyn bathroom so I could rush to shower while the baby was awake, peeking out of the shower curtain every 8 seconds. Now I'm six years out and showering does not involve any of that -- can you believe it? Everything changes. Sending love. Hope you can get some naps that are longer than an hour! (My firstborn was a strict 45 min napper for the first year of his life, though, so, I get it if you can't.) Now naps are long gone but he's a great sleeper at night! (Not the case for months 1-13). Everything changes. xoxo.
Yessss that quote really stopped me in my tracks! I'm so glad I'm reading it now because I thought I was so open-minded but I'm realizing how much potential this little baby has for threatening my ego!! Of course, everyone asks whether Mari Jr looks more like me or Mr Mari and both of us keep projecting our own selves on this innocent little face...I can only imagine the impulse gets even stronger when you start seeing their personalities! Trying very very hard to see this journey as one of discovery more than guidance, but I know that will be challenging!!
"Everything changes." Such a good reminder-- I need that tattooed on my face :)))
Thank you as always for speaking so throughly and kindly across the board! Since you’re one of my faves, I’ll give my two cents if the masses care:). While raising the sweetest kiddo with a disability and also intense medical, it is so true that the challenges are far less when you surrender anything individualist inside yourself. We couldn’t do this journey if we white knuckled it, but despite even the most connections we try to foster (mostly with family because it takes a VERY insiders view to see this kind of deep need), every day is still a lot. Most won’t know this unless they live it ;). I think we could go one step further and say that stepping inside another’s world when we think we “understand” it, would actually shock almost everyone. This is true for my situation where isolation still occurs despite my best efforts to stay connected:). It’s probably true for you in this new world you find yourself in with sweet Mari Jr. We all need each other and need deeper empathy.
I am always happy to see you in my inbox:). Still wanting to read your book- hopefully soon! Would love to keep connecting more - and I’m praying for your journey!
Oh my dear Julie, I want to hug you! Thank you sooo much for this—it’s such a gracious perspective, and you’re completely right! I can only imagine how much of the daily reality can’t be seen or understood from the outside, no matter how much empathy someone thinks they have. (My therapist just shared that the less experience someone has in a particular circumstance, the more they *think* they understand it, which is so wild--why are humans like this!)
I really appreciate you naming the isolation that can still exist even with community and surrender- I wish I had worded that section with more care toward that truth. What I was trying (gah, very clumsily!!!) to get at was how identity and expectations can shape resilience—how the stories we tell ourselves about what a “good” life or “successful” family looks like can make it harder or easier to adapt when those stories get interrupted. For people whose sense of worth is built around control (like mine so often has been!), life’s curveballs (for lack of a better euphemism) can feel like personal failures. But when identity is already built around interdependence or flexibility, change doesn’t threaten the foundation of contentment as much.
Of course, that’s very different from the *lived* experience of caring for a child with deep, ongoing needs, which I know is its own full world of challenges and love that can’t be understood from the outside. Poor example on my part! Thank you for giving this such a thoughtful read—I’ll be carrying your words with me, and thinking of you often as usual!!!
This was such a beautiful comment, you’re one of the most gracious and heart filled people I “know.” I feel like I know you and definitely think reading one’s deepest words constitutes for knowing someone :). Please don’t worry, your whole essay was beautiful, and I was thinking less of you and more to the masses when I spoke my little mama bear piece about challenges and disability . I’ve experienced so much love AND also so much broad brushing (kind of like you spoke of from what your therapist mentions… we all want to believe we know even when we don’t haha). I LOVED what you said about letting a hard thing be hard and also opening oneself up to surprises along the way. You worded that so kindly to all of us tough on ourselves people… I hope you are kind to yourself today and I will continue to carry your words with me as we enter surgery for my sweet boy tomorrow. Bless you friend.
The ideas in this book are lovely. However as a professional who has worked with families of children with disabilities for several years they read as romantic fiction or wishful thinking rather than truth. The reality for most is brutal, exhausting, isolating, frustrating and demoralising for the most part and most parents would immediately spend their first wish on their child having full health. Moreover, it hits minority and poorer families harder because it is punishingly expensive to have a child with a disability and most female carers end up sacrificing their career and social life to care for their child around the clock. Sadly these are tragic realities- the life of a parent whose child has a serious disability cannot be sugar coated or romanticised in the vast majority of cases.
You’re absolutely right to call this out, and I really appreciate you taking the time to do so. I was totally inarticulate, but I didn't intend to imply that parenting a child with a disability is anything less than profoundly difficult, or to romanticize what is, as you said, often an exhausting and isolating reality. The section of my essay that referenced Andrew Solomon’s work was an example of fixed identity vs happiness, and was meant to explore something much narrower: how parents’ *identities*—especially those built around independence, achievement, or control—can feel more destabilized when those values are disrupted, compared to those whose lives already depend on shared care or adaptability. But I can see how, without enough context, that could sound like I was minimizing the very real, ongoing challenges of disability itself.
I completely agree that there’s a real danger in over-intellectualizing or idealizing hardship, and I’ve written before about how no one should romanticize disability or suffering. It’s a tension I’m always trying to handle with more care, and your comment is such a valuable reminder to keep that balance. Thank you again for reading—and for doing the work you do with families who live this reality every day. <3
Thank you—“I used to get irritated when people around me would call me "strong" during times of tribulation, like, What is strength even doing for me?? And, furthermore, do I have a choice?”
I’ve been in this spot for awhile. I’m tired of being “strong”. What you wrote is one of the first things that captures why the platitudes can feel worse. I’m grateful to hear about your experiences and your POV.
Ugh!!! I used to literally pray "STOP MAKING ME STRONG; I'M SICK OF IT!" I actually have a tattoo devoted to this sentiment as well (a bull, because they've been made to fight but all they want to do is relax in a meadow). Hoping you can relax in your own meadow very soon xoxo
Love that—thank you!!
What a gift your writing is, Mari ☺️
What a beautiful read! This was a what can I read now I’m randomly awake type of thing and your words resonated deeply. Speaking life fluently is such an inspiring concept. X
So I just love you! That's all!
The illustration in the Greek school 🥹 thank you for always infusing your letters with so much wisdom 💜
Beautiful essay!
This is lovely and so thoughtful and inspiring! You've also tickled a few ideas, about how cultures approach "speaking life" in different ways, that will help with some worldbuilding materials I'm developing. An unexpected boon!
What a fun comment! Tickled! Worldbuilding! Boon! Such a treasure trove of sweet words!
Mari, thank you for this. As always, you put on the page what ruminates through my mind. As a mother of two young kids, one who is neurotypical, my husband and I contain both the beauty and the struggle. It's a tender balance but one that exists for most people out there. When talking to my parents about this recently, my mother looked at me and said" We don't get to choose our cross" - which sounds harsh but is true. She lost both her parents when they were very. young and had a disabled sister herself and yet, life moves on. And we continue to find joy in those cracks. Thank you for speaking to that. Also, I am from Mexico and live in brooklyn - my first language is Spanish. I'd be happy to exchange conversational spanish hangouts with you for some creativity talks! haha
I love how you put it: CONTAIN the beauty and the struggle. I'm imagining a big painted pot of stew or flowers or something, containing all the yuck and the beauty/deliciousness at once! Your mom’s words hit hard too; they carry that tough kind of wisdom that only really lands once you’ve lived through it. God bless her!!
Also, I love the idea of a Spanish–creativity exchange! What a lovely offer! And what a fun connection between your worlds in Mexico and Brooklyn. Thank you again for reading and for sharing such thoughtful reflections--I’m really touched.
I soaked up every word of this - thank you!
Thank you for this and your other writing! I loved your book and am passing it around. I am 71 with dwarfism. The chapter on dwarfism in Andrew Solomon's book is among the most thoughtful on the topic out there.
Jon! What a kind and uplifting comment; thank you so much for reading my book, and this!! I loved that chapter in Far From the Tree, and moved to hear that it resonated! The amount of research and empathy it took for him to write that book completely astounds me.
I appreciate you!