You woke up and wrote that moving, tearful, elegant ode to you and your daughter in one sitting? Then gave it to us? You are remarkable. Your writing is deeply beautiful, cuts through the surface quickly. Your ability to say what words mean makes me envious.
Iām so sorry for your loss (was it only one?). And grateful you have the courage and the language to share with us. Your neighbor (16th) in Paris
Thank you Sara! It was two, same reason (genetic bad luck), but only one needed bureaucratic action this week. I maybe should have made that clearerāthe downside of publishing a first draft for sure! But thank you very much and hello from the 2nd š
Thanks, Summer. Getting the tone right in piece like this is a tightwire act--which of our many voices will embody the mood accurately, honoring both the truth as experienced at the time when the events happened and how they've morphed over time. When the action's hot, write cool, we're sometimes told. "Cool" here is the powerful sense of restraint you manage--we can feel you holding back . . . "cool" doesn't mean cold, which is what too much restraint leaves you with; it means cool enough not to supercharge the sound to the point where it sounds generic--the sound of anybody's grief. We hear you relying on the details. I don't know your other writing, but having read this I'm sure I'd trust it. I have two grown sons with children . . . sometimes the world, or a piece of writing, jostles me into remembering how much needs to go right to make a human being--or how tiny the wrong can be. I'm sure others are reading this as a cry of the heart--if it sounds like I'm reading it just a piece of writing, that's my MO, but I'm moved to comment because the writing let me feel your truth.
David, I mean this sincerely: thank you very much for responding to what this is, which is literature/art, or at least an attempt at it. No shade meant to anyone who responds to it purely as an emotional statement by me, but I really appreciate your comment and attention to detail. Thank you. If I want sympathy, I call my best friend or my mom. I don't write an essay.
Thank you for sharing this tender and meaningful story. I appreciate your openness and vulnerability.
I was born with monosomy X (Turner syndrome) which has only a 98% chance of being carried to term, but like the medical developments with Downs, once born, has every possiblity of a long and healthy life. All that is just to say that genetics and the stories and life alterations that come with them are fascinating and meaningful to me. So again, thank you for sharing.
Thank you! Iām trying to find the wordsā¦ You made an impact, changed a life, and made me more aware. Also, youāre a very good writer. Thanks for sharing. I wish you the best and look forward to reading more of your work.
This beautiful piece is about you, a mother, twice-over, the roles we think of ourselves as, and thoughtlessness of words by some. It's beautiful, poignant, and an excellent first-draft. It's also helpful to me.
You & I have interacted now for a number of years, on social media first, and then through your Substack. You're amazing Summer, and I'm thankful for you, your writing, and our occasional interactions. Through your writing, I have grown to care about you, as one would an acquaintance or neighbor.
We don't know everything about these people that matter to us, yet we don't see, hear, or communicate with as often as those in our closer circles. Yet, for those of us with empathy, we still care about them, and wonder how their lives are when we their lives & ours don't touch for a while. And if we're blessed or cursed with good memories, we remember details about their lives, both those they tell us and those they don't yet we can observe or sense.
I have memories of being worried about you both in 2021 and 2023, Summer. Maybe you mentioned your pregnancies back then, though for whatever reason, I don't remember those, and I apologize for that. Of course, now it makes sense to me why you were sorrowful, and while there was nothing that anyone could have done to change those outcomes, I still wish that I could have been of more help to you then.
Maybe though, I may be of help now.
Here in The States, I have a friend who is a mother of two. One of her girls is now 16, and loves music and cartoons and language. One of her girls passed away before her first birthday, from complications of Downs Syndrome. As part of her friend group, we all did everything we could to help, and to learn how to be better friends. One of the things that we all learned was that many psychologists say that it helps some parents who lose a child to death to still refer to them, to not shut them out of our memories, and to say they they are still the parents of children who are no longer among the living.
For my friend, that has helped. And so I offer this idea to you as well.
You are a writer, a woman, someone I admire, someone I enjoy communicating with when that happens, and a mother, who with these words is still showing she is taking care of the spirits of her daughters. You are as good a mother as life, chromosomes, mortality, and fate has allowed for, and I hope your telling all of us these words gives you more energy the next time someone chooses knowingly to use the wrong wards, as you noted here
Speaking of words, may your words continue to help others Summer, as so many of your words have done across the years. And may my words to you here help you.
Thank you, Summer. We only get through this life together, and if we're lucky, we meet amazing people along the way who help us to be better versions of ourselves.
You've reminded me many times to be a better version of myself - to take a breath, to take a moment, to see & hear, & smell the fleeting beauty of life - and to not be so angry all the time. Sitting in the firehose of U.S. political news, trying to make the incomprehensible understandable, as is my job, it's all-too easy to miss the moments that make life worthwhile. Thank you for reminding me to do that.
I'm honored to be connected with you this way, and may we continue to be in each other's digital vicinity (I like that phrase), and continue to help bring out the best in each other.
Lovely and compelling and educational. When I was a kid the disabled, genetically different and the slow were mostly hidden. That times have changed to the extent that many families are completed with these children who are seen and accepted by all is a testament to our evolving humanity together as a society. Essays like this one push us closer to grace.
Thank you for sharing this very moving and painfully beautiful story.
Thank you for reading š
You woke up and wrote that moving, tearful, elegant ode to you and your daughter in one sitting? Then gave it to us? You are remarkable. Your writing is deeply beautiful, cuts through the surface quickly. Your ability to say what words mean makes me envious.
Iām so sorry for your loss (was it only one?). And grateful you have the courage and the language to share with us. Your neighbor (16th) in Paris
Thank you Sara! It was two, same reason (genetic bad luck), but only one needed bureaucratic action this week. I maybe should have made that clearerāthe downside of publishing a first draft for sure! But thank you very much and hello from the 2nd š
Thanks, Summer. Getting the tone right in piece like this is a tightwire act--which of our many voices will embody the mood accurately, honoring both the truth as experienced at the time when the events happened and how they've morphed over time. When the action's hot, write cool, we're sometimes told. "Cool" here is the powerful sense of restraint you manage--we can feel you holding back . . . "cool" doesn't mean cold, which is what too much restraint leaves you with; it means cool enough not to supercharge the sound to the point where it sounds generic--the sound of anybody's grief. We hear you relying on the details. I don't know your other writing, but having read this I'm sure I'd trust it. I have two grown sons with children . . . sometimes the world, or a piece of writing, jostles me into remembering how much needs to go right to make a human being--or how tiny the wrong can be. I'm sure others are reading this as a cry of the heart--if it sounds like I'm reading it just a piece of writing, that's my MO, but I'm moved to comment because the writing let me feel your truth.
David, I mean this sincerely: thank you very much for responding to what this is, which is literature/art, or at least an attempt at it. No shade meant to anyone who responds to it purely as an emotional statement by me, but I really appreciate your comment and attention to detail. Thank you. If I want sympathy, I call my best friend or my mom. I don't write an essay.
Thank you for sharing this tender and meaningful story. I appreciate your openness and vulnerability.
I was born with monosomy X (Turner syndrome) which has only a 98% chance of being carried to term, but like the medical developments with Downs, once born, has every possiblity of a long and healthy life. All that is just to say that genetics and the stories and life alterations that come with them are fascinating and meaningful to me. So again, thank you for sharing.
Thank you for replying Sarah, your reply means a lot.
Beautifully written, you take us right with you.
This broke my heart. What a gift you have with words. I am so sorry for your loss
Thank you, and no need to be sorry!
Thanks so much, Summer. Beautiful and brave, as always.
Thank you! Iām trying to find the wordsā¦ You made an impact, changed a life, and made me more aware. Also, youāre a very good writer. Thanks for sharing. I wish you the best and look forward to reading more of your work.
"sa mĆØre" forever...xx
So beautiful and poignant, Summer.
This is a beautiful and moving piece. I also learned from it. Thank you.
Thank you for your words that touched me deeply for so very many often unspoken reasons.
This beautiful piece is about you, a mother, twice-over, the roles we think of ourselves as, and thoughtlessness of words by some. It's beautiful, poignant, and an excellent first-draft. It's also helpful to me.
You & I have interacted now for a number of years, on social media first, and then through your Substack. You're amazing Summer, and I'm thankful for you, your writing, and our occasional interactions. Through your writing, I have grown to care about you, as one would an acquaintance or neighbor.
We don't know everything about these people that matter to us, yet we don't see, hear, or communicate with as often as those in our closer circles. Yet, for those of us with empathy, we still care about them, and wonder how their lives are when we their lives & ours don't touch for a while. And if we're blessed or cursed with good memories, we remember details about their lives, both those they tell us and those they don't yet we can observe or sense.
I have memories of being worried about you both in 2021 and 2023, Summer. Maybe you mentioned your pregnancies back then, though for whatever reason, I don't remember those, and I apologize for that. Of course, now it makes sense to me why you were sorrowful, and while there was nothing that anyone could have done to change those outcomes, I still wish that I could have been of more help to you then.
Maybe though, I may be of help now.
Here in The States, I have a friend who is a mother of two. One of her girls is now 16, and loves music and cartoons and language. One of her girls passed away before her first birthday, from complications of Downs Syndrome. As part of her friend group, we all did everything we could to help, and to learn how to be better friends. One of the things that we all learned was that many psychologists say that it helps some parents who lose a child to death to still refer to them, to not shut them out of our memories, and to say they they are still the parents of children who are no longer among the living.
For my friend, that has helped. And so I offer this idea to you as well.
You are a writer, a woman, someone I admire, someone I enjoy communicating with when that happens, and a mother, who with these words is still showing she is taking care of the spirits of her daughters. You are as good a mother as life, chromosomes, mortality, and fate has allowed for, and I hope your telling all of us these words gives you more energy the next time someone chooses knowingly to use the wrong wards, as you noted here
Speaking of words, may your words continue to help others Summer, as so many of your words have done across the years. And may my words to you here help you.
Sending you love, light, peace, and thanks.
This touched me. It's nice to have traveled along in your digital vicinity through these years. Thank you š.
Thank you, Summer. We only get through this life together, and if we're lucky, we meet amazing people along the way who help us to be better versions of ourselves.
You've reminded me many times to be a better version of myself - to take a breath, to take a moment, to see & hear, & smell the fleeting beauty of life - and to not be so angry all the time. Sitting in the firehose of U.S. political news, trying to make the incomprehensible understandable, as is my job, it's all-too easy to miss the moments that make life worthwhile. Thank you for reminding me to do that.
I'm honored to be connected with you this way, and may we continue to be in each other's digital vicinity (I like that phrase), and continue to help bring out the best in each other.
I am struck again my your gift for merging erudition with beauty and pain.
Lovely and compelling and educational. When I was a kid the disabled, genetically different and the slow were mostly hidden. That times have changed to the extent that many families are completed with these children who are seen and accepted by all is a testament to our evolving humanity together as a society. Essays like this one push us closer to grace.
Thank you for sharing what is a very private story. And you're completely correct that some words should fall out of disuse.