Shanley. I've stopped holding my breath and biting my trembling lower lip to tell you that we want to help. We = two 70 year old, retired, well off couple. Why? Oh that. Because we're all just walking each other home. Because we can. Because baby boy Hurt needs an MRI. Not sure how we can get in touch off the public comments page, but I'm resourceful. I'll figure it out. Until then, laugh with him, touch his spot and declare that it is just a birthmark, make the appointment. Maybe give me the dr's contact info so we can figure out the logistics. Until then, breathe and believe. D
that is remarkably kind. If you click on Shanley's name at the top of this page, you will be taken to her profile page, which allows you to leave her a direct message.
I keep trying to find a way to answer these comments, and I keep coming back to the same feeling; amazement.
I was writing, not with expectations, but with the hope of helping to expose what an extractive and capitalist economy does to people, I was writing about fear and love; and you all answered with care.
I wrote about denial letters, impossible choices, housing instability, and the brutal little calculations families are forced to make when care and shelter are treated as privileges instead of promises, you all answered by refusing to let me and my family stand inside that alone. That is no small thing, and I am deeply in awe of your kindness.
Every Sunday, I write about hope for humanity. I go looking through the news for the stories that suggest we may not be a lost species after all, the small acts of courage and mercy and decency that remind me people are still capable of choosing one another. And then you all showed me that hope firsthand, you became the story I am always searching for.
There is a kind of hope that doesn’t announce itself brightly, it doesn’t fix everything, it doesn’t erase the denial letter or pack the boxes or make the MRI suddenly approved. But it changes the room, it reminds the frightened people inside it that they are seen, that their child matters, that their family matters, that the future is not only being shaped by cruelty and indifference. That is what you have all done here, and I just could not be more grateful for the kindness and love from each of you.
Many of you have asked me to create a GoFundMe, and I am humbled by that, and honestly still trying to learn how to receive it, I’ve always been kind of an independent gal. But because the offers have come with so much tenderness and practical love, I have created one and linked it here: https://gofund.me/75a928dab
Funds will go toward our baby’s MRI and related medical costs if insurance continues to deny or delay care, and toward the urgent housing and moving expenses our family is facing.
Please know that your kindness has already become part of the story, as proof that even inside systems built to isolate and exhaust people, we can still reach for each other. Thank you for being careful hands, like the ones making nests for sea turtle eggs, or relocating tortoises, or jumping into a freezing lake to save a baby when you can’t swim, or bringing white rhinos back home, you all embody each and every one of my Sunday reminders that hope for humanity may still exist after all. Thank you for helping me and my family remember that hope can be communal and thank you for refusing to let the machinery have the last word.
Another beautiful, thought-provoking essay. Shanley, make your appeal, and include this essay. I say that because I went through something similar with my youngest many years ago. The appeal did not work; however, I followed up with a heartfelt description about what this was costing me, not materially, but mentally. I received an approval letter so quickly, it made my head spin. I believe that sometimes the heart replaces the mechanics of the systems, you just have to reach the right person.
Also, as others have suggested, this is an excellent reason for a "Go Fund Me." I, too, will contribute! You do what you need to do for your baby and your family.
Oh, Shanley, you're carrying so much, and still finding time to reflect on it all...so that we can see the wrongs that are happening all around us. I can't imagine how infuriating it would be to have a reasonable test for my baby denied...unleash your Momma Bear and let them have it!
I join Dorothy in saying we'd be glad to help. If you set up a GoFundMe, we'll certainly contribute!
Let me suggest that you make a book out of your posts here. I will buy it in a red-hot second if you do. I am amazed at your skill.
Next I will try to be a hand that helps. A friend of mine who got a terminal cancer diagnosis without insurance worked out the following trick: when it was MRI time, he offered the clinic HALF of what they quoted for the scan if he paid them in
CASH, no insurance arguments or paperwork. They took the deal every time. What does the clinic want for the scan? Please let me know. - Niels
My heart broke again as did my faith that there is humanity left. As I stated on another post on Substack, my hope is getting thinner and thinner. Your defining hope as basically refusal letting the machinery have the last word redefined what hope is.
I don’t send thoughts and prayers. I was thinking of a Go Fund me account. I don’t have a lot but would donate what I could. Then I saw Dorothy’s post and cried. So don’t let that machinery have the last word. Keep us updated and let people help.
I’m with Barbara G and all here who want to help. I am sure that is not what you intended with your candid and heartbreaking essay here. But here we are —- tell us how and which way to help.
The striking, almost casual eloquence of the writing here is breathtaking, and certainly (mother & daughter combined) certainly justifies the price of subscription. Just one of today's examples:
"resilience is one of those words America loves to hand to people it has no intention of helping. It sounds generous until you notice how often it is used as a substitute for justice."
This very moving letter should be placed in every newspaper for every parent facing something like you are facing, it should be ready aloud from the roof of every building, I, Iwill be thinking about you, you know that you have the resourcefulness to survive this but there are probably millions of people with fewer resources, whatever happens to them, those less able, bless you and yours, I will be thinking about you, bless the little laughing fellow, chin up shoulders back, you will prevail.
I'm late to the payment party as your first 2 replies say what I had planned to, ie Go Fund Me and I want to help.
I just turned 80, my husband even older. We might have enough to pay bills if we don't live too many years longer, so we can do something today. Please let us know once the Go Fund Me account is available. (I'd set it up myself on your behalf if I was computer savvy enough!). In the meantime I'll figure out a way to get something monetary to you. If Michael Wolfe (a millionaire) can set up a Go Fund me to pay his legal fees for suing Melania, I sure can believe your son's health is an extremely worthy use of the platform.. And if all your followers re-post your article today on every platform available and supplying the Go Fund with it the Go Fund Me account info, your son could have that MRI real soon! Let's get this done. You are not alone!!
Another Dorothy here who would contribute. Also, 70’s, but hedging some because our adult child with a medical condition lost his job and his health insurance. Such a fight in our country to get care. Heath insurance is a holy grail for so many and it constricts one’s choices for paid work. A cruel system.
As a mother, I have to say, no words to describe how stressful this must be for you and your family. I hope you get it sorted out and the appeal works to approve the MRI. Also, that you find a new and better place to live where you can build strong family memories to sustain you.
As a retired family physician with 46 years of experience I haven’t seen the lesion of course but it sounds like a capillary hemangioma. These usually grow initially and then they involute or get smaller. You’re right about our health care system but I think you should wait awhile. MRI’s take time to perform and the baby needs to be still. I don’t think it’s worth sedating an eighth month old without symptoms.
My heart aches reading your essay; and my body shakes with fury at what we the people have allowed to be normal. As with all basic human needs in American life, the difference money makes in health care access and quality is unforgivably vast. Please consider the offers on this thread. Many of us would be happy to chip in - and we’re also ready to shame your insurer publicly for its obscene denial of this thoroughly justified test.
Shanley. I've stopped holding my breath and biting my trembling lower lip to tell you that we want to help. We = two 70 year old, retired, well off couple. Why? Oh that. Because we're all just walking each other home. Because we can. Because baby boy Hurt needs an MRI. Not sure how we can get in touch off the public comments page, but I'm resourceful. I'll figure it out. Until then, laugh with him, touch his spot and declare that it is just a birthmark, make the appointment. Maybe give me the dr's contact info so we can figure out the logistics. Until then, breathe and believe. D
There is still good in the world. Your generous offer is so kind. Thank you from another reader whose heart grew 3 sizes when I read your response.
that is remarkably kind. If you click on Shanley's name at the top of this page, you will be taken to her profile page, which allows you to leave her a direct message.
Ditto.
How kind of you! Thank you.
We too are in our mid 70’s and will gladly help. A Go Fund Me might be the way to go?
A Go Fund Me would be wonderful right now - whoever knows how to start one would be a saint🙏🏼
People like you are the reason we keep believing things can get better. We just need to help one another when we can.
I keep trying to find a way to answer these comments, and I keep coming back to the same feeling; amazement.
I was writing, not with expectations, but with the hope of helping to expose what an extractive and capitalist economy does to people, I was writing about fear and love; and you all answered with care.
I wrote about denial letters, impossible choices, housing instability, and the brutal little calculations families are forced to make when care and shelter are treated as privileges instead of promises, you all answered by refusing to let me and my family stand inside that alone. That is no small thing, and I am deeply in awe of your kindness.
Every Sunday, I write about hope for humanity. I go looking through the news for the stories that suggest we may not be a lost species after all, the small acts of courage and mercy and decency that remind me people are still capable of choosing one another. And then you all showed me that hope firsthand, you became the story I am always searching for.
There is a kind of hope that doesn’t announce itself brightly, it doesn’t fix everything, it doesn’t erase the denial letter or pack the boxes or make the MRI suddenly approved. But it changes the room, it reminds the frightened people inside it that they are seen, that their child matters, that their family matters, that the future is not only being shaped by cruelty and indifference. That is what you have all done here, and I just could not be more grateful for the kindness and love from each of you.
Many of you have asked me to create a GoFundMe, and I am humbled by that, and honestly still trying to learn how to receive it, I’ve always been kind of an independent gal. But because the offers have come with so much tenderness and practical love, I have created one and linked it here: https://gofund.me/75a928dab
Funds will go toward our baby’s MRI and related medical costs if insurance continues to deny or delay care, and toward the urgent housing and moving expenses our family is facing.
Please know that your kindness has already become part of the story, as proof that even inside systems built to isolate and exhaust people, we can still reach for each other. Thank you for being careful hands, like the ones making nests for sea turtle eggs, or relocating tortoises, or jumping into a freezing lake to save a baby when you can’t swim, or bringing white rhinos back home, you all embody each and every one of my Sunday reminders that hope for humanity may still exist after all. Thank you for helping me and my family remember that hope can be communal and thank you for refusing to let the machinery have the last word.
Another beautiful, thought-provoking essay. Shanley, make your appeal, and include this essay. I say that because I went through something similar with my youngest many years ago. The appeal did not work; however, I followed up with a heartfelt description about what this was costing me, not materially, but mentally. I received an approval letter so quickly, it made my head spin. I believe that sometimes the heart replaces the mechanics of the systems, you just have to reach the right person.
Also, as others have suggested, this is an excellent reason for a "Go Fund Me." I, too, will contribute! You do what you need to do for your baby and your family.
Oh, Shanley, you're carrying so much, and still finding time to reflect on it all...so that we can see the wrongs that are happening all around us. I can't imagine how infuriating it would be to have a reasonable test for my baby denied...unleash your Momma Bear and let them have it!
I join Dorothy in saying we'd be glad to help. If you set up a GoFundMe, we'll certainly contribute!
Let me suggest that you make a book out of your posts here. I will buy it in a red-hot second if you do. I am amazed at your skill.
Next I will try to be a hand that helps. A friend of mine who got a terminal cancer diagnosis without insurance worked out the following trick: when it was MRI time, he offered the clinic HALF of what they quoted for the scan if he paid them in
CASH, no insurance arguments or paperwork. They took the deal every time. What does the clinic want for the scan? Please let me know. - Niels
My heart broke again as did my faith that there is humanity left. As I stated on another post on Substack, my hope is getting thinner and thinner. Your defining hope as basically refusal letting the machinery have the last word redefined what hope is.
I don’t send thoughts and prayers. I was thinking of a Go Fund me account. I don’t have a lot but would donate what I could. Then I saw Dorothy’s post and cried. So don’t let that machinery have the last word. Keep us updated and let people help.
I’m with Barbara G and all here who want to help. I am sure that is not what you intended with your candid and heartbreaking essay here. But here we are —- tell us how and which way to help.
Hope springs eternal against the obvious. Hoping for you and yours.
The striking, almost casual eloquence of the writing here is breathtaking, and certainly (mother & daughter combined) certainly justifies the price of subscription. Just one of today's examples:
"resilience is one of those words America loves to hand to people it has no intention of helping. It sounds generous until you notice how often it is used as a substitute for justice."
wow! and thank you!
This very moving letter should be placed in every newspaper for every parent facing something like you are facing, it should be ready aloud from the roof of every building, I, Iwill be thinking about you, you know that you have the resourcefulness to survive this but there are probably millions of people with fewer resources, whatever happens to them, those less able, bless you and yours, I will be thinking about you, bless the little laughing fellow, chin up shoulders back, you will prevail.
I'm late to the payment party as your first 2 replies say what I had planned to, ie Go Fund Me and I want to help.
I just turned 80, my husband even older. We might have enough to pay bills if we don't live too many years longer, so we can do something today. Please let us know once the Go Fund Me account is available. (I'd set it up myself on your behalf if I was computer savvy enough!). In the meantime I'll figure out a way to get something monetary to you. If Michael Wolfe (a millionaire) can set up a Go Fund me to pay his legal fees for suing Melania, I sure can believe your son's health is an extremely worthy use of the platform.. And if all your followers re-post your article today on every platform available and supplying the Go Fund with it the Go Fund Me account info, your son could have that MRI real soon! Let's get this done. You are not alone!!
Another Dorothy here who would contribute. Also, 70’s, but hedging some because our adult child with a medical condition lost his job and his health insurance. Such a fight in our country to get care. Heath insurance is a holy grail for so many and it constricts one’s choices for paid work. A cruel system.
As a mother, I have to say, no words to describe how stressful this must be for you and your family. I hope you get it sorted out and the appeal works to approve the MRI. Also, that you find a new and better place to live where you can build strong family memories to sustain you.
As a retired family physician with 46 years of experience I haven’t seen the lesion of course but it sounds like a capillary hemangioma. These usually grow initially and then they involute or get smaller. You’re right about our health care system but I think you should wait awhile. MRI’s take time to perform and the baby needs to be still. I don’t think it’s worth sedating an eighth month old without symptoms.
Samuel Richard, MD
Some issues are considerably nuanced. Always good to have a second, and third, opinion from experienced experts in the field.
My heart aches reading your essay; and my body shakes with fury at what we the people have allowed to be normal. As with all basic human needs in American life, the difference money makes in health care access and quality is unforgivably vast. Please consider the offers on this thread. Many of us would be happy to chip in - and we’re also ready to shame your insurer publicly for its obscene denial of this thoroughly justified test.
Thank you Shanley. This is all so true. I have seen it first hand as well as an elder.
Once again, I give grateful thanks that I live in the UK, where by and large we don’t need to worry about healthcare because we have the NHS.