I have really strong boundaries around sharing my child’s health stuff with people - social media or otherwise! We frame it like this: it’s HIS story to tell, and we don’t want him to resent the way we handled it before he was old enough to have a say.
The information is on a need to know basis. Teachers and school professionals? Need to know. Close family and friends? Need to know - our biggest support system! Every last extended family member? Nope! Casual acquaintances? Nope! Folks on social media? NOOO!
Have I posted in the occasional forum? When someone is seeking specific help who is in a similar boat? Sure! Have I asked others for personal info in those same forums? Sure. Do I prefer to move it to a private message when possible? Absolutely.
Now our child js in elementary school and knows enough about their diagnoses to be able to communicate for themselves sometimes which is great. More people know now, because our kid is old enough to tell whoever he wants.
Were the early years lonely? Yes. Even with a support system in place. I empathize with this take on parents sharing simply out of desperation — you feel somehow in control (of the posts, the info) so you maintain this record because you’re clinging to this community of people who have a parasocial relationship with you online. But that’s not community (in my viewpoint). It rings hollow. It exacerbates the loneliness, in a way.
It’s so complicated, and there are so many ways to do it. Kids growing up in public, so online, for all to see! It’s wild. So much to think about here. Thank you!
I’ve struggled with the whole issue of posting my son’s CHD journey online. By preference I’m not somebody who likes posting online even when it’s about myself, and generally avoid doing so on any medium. Especially when it came to setting up a GoFundMe for my son’s medical bills resulting from his CHD, I was adamantly opposed to doing so for exactly the reasons you listed. My son can’t advocate for himself yet, and I felt it was an invasion of his privacy to post about his personal health status to ask for help from others. If I’m being honest I’m still not completely comfortable with it, and I struggle with the thought of him one day telling me that he wished we hadn’t posted about his defect and that it makes him uncomfortable that so many people know about it. But given how things have played out for us, we had a lot of medical bills already from doing IVF (which at the time was not covered by our insurance,) and adding this on top of it left us feeling like we were short on options. It has provided us with much more comfort and solidarity, especially hearing from other heart parents who’ve reached out to us after reading about his story on our page, but long term I worry about the effect this will have on him, and I only hope that as his father I work hard now to find an answer to these questions so that I’m prepared for what issues they might bring about in the future.
When my son was alive, I didn’t share as much publicly. I was pretty strict about not sharing his image on social media at all. I started writing on Substack and mostly wrote about my life, but I did start sharing his health info in bits and pieces because my audience was almost exclusively friends and family at that time. Hard to say how that would have evolved, I think I likely wouldn’t have felt comfortable sharing pictures of Han as he went through surgery but I imagine I would have written about it from my perspective.
For any future children, I will probably rediscover my interest in their privacy.
My son was born in 1984, long before the advent of social media. I did post a photo of him leaving the hospital in 2021 after a grueling five weeks recovery from botched pacemaker replacement surgery. So...part of his story belongs to me and to his dad and his sister and all those who love us. I don't think I would do a blow by blow account, but yes, his operations and hospitalizations were indeed the scariest moments of our lives and, no, there wasn't a tremendous amount of support. Indeed, there still isn't! The truth is, no one understands these journeys unless one has gone on one. So social media allows young (and old) parents to interact with people who are can understand. I do know that my son would never post anything about his experience on social media, or on this forum either. I wonder how many adults with chd would...that is why I find this blog so compelling!! Thank you for your thoughtful comments, Leigh, as always!
I was born in 1983, and my uncle literally had to use the card catalog of his law library to find any information on Truncus Arteriosus.
There simply was no support.
We were simply “fixed” and then told to go be normal.
I didn’t meet another person with Truncus until I joined a Facebook group and a parent reached out to me to see if we could meet.
It was huge, meeting this tiny little human who also had what I had, and his getting to know his mom helped me appreciate so much more what my own mother went through.
It turns out, we all needed support and understanding from someone who has been there.
I really appreciated this piece.
I think that the support groups that have popped up via social media are one of the only good things about social media.
But I am also glad that I did not grow up with social media.
Hi Leigh, I thought your post was rightly challenging for me as a mum of a teenager with CHD. I did post a lot on my Facebook page to keep friends and family updated during those early years. It was a great tool for them to understand what was going on and with lots of them having a faith for them to be able to know how to pray.
Thankfully my posts were limited to friends and I was able to keep photos private for them. But as I've been blogging it's brought things into light again about how much to share.
My son is now old enough that I can discuss things with him and have his consent to share things.
But it's a good question to ask and one for me to keep asking as I share stories about our family life.
This is really thought-provoking. My surgery was in 1998, so long before social media sharing. I really have no idea what things would've been like had that existed then.
I have really strong boundaries around sharing my child’s health stuff with people - social media or otherwise! We frame it like this: it’s HIS story to tell, and we don’t want him to resent the way we handled it before he was old enough to have a say.
The information is on a need to know basis. Teachers and school professionals? Need to know. Close family and friends? Need to know - our biggest support system! Every last extended family member? Nope! Casual acquaintances? Nope! Folks on social media? NOOO!
Have I posted in the occasional forum? When someone is seeking specific help who is in a similar boat? Sure! Have I asked others for personal info in those same forums? Sure. Do I prefer to move it to a private message when possible? Absolutely.
Now our child js in elementary school and knows enough about their diagnoses to be able to communicate for themselves sometimes which is great. More people know now, because our kid is old enough to tell whoever he wants.
Were the early years lonely? Yes. Even with a support system in place. I empathize with this take on parents sharing simply out of desperation — you feel somehow in control (of the posts, the info) so you maintain this record because you’re clinging to this community of people who have a parasocial relationship with you online. But that’s not community (in my viewpoint). It rings hollow. It exacerbates the loneliness, in a way.
It’s so complicated, and there are so many ways to do it. Kids growing up in public, so online, for all to see! It’s wild. So much to think about here. Thank you!
I’ve struggled with the whole issue of posting my son’s CHD journey online. By preference I’m not somebody who likes posting online even when it’s about myself, and generally avoid doing so on any medium. Especially when it came to setting up a GoFundMe for my son’s medical bills resulting from his CHD, I was adamantly opposed to doing so for exactly the reasons you listed. My son can’t advocate for himself yet, and I felt it was an invasion of his privacy to post about his personal health status to ask for help from others. If I’m being honest I’m still not completely comfortable with it, and I struggle with the thought of him one day telling me that he wished we hadn’t posted about his defect and that it makes him uncomfortable that so many people know about it. But given how things have played out for us, we had a lot of medical bills already from doing IVF (which at the time was not covered by our insurance,) and adding this on top of it left us feeling like we were short on options. It has provided us with much more comfort and solidarity, especially hearing from other heart parents who’ve reached out to us after reading about his story on our page, but long term I worry about the effect this will have on him, and I only hope that as his father I work hard now to find an answer to these questions so that I’m prepared for what issues they might bring about in the future.
This is so big and so hard.
When my son was alive, I didn’t share as much publicly. I was pretty strict about not sharing his image on social media at all. I started writing on Substack and mostly wrote about my life, but I did start sharing his health info in bits and pieces because my audience was almost exclusively friends and family at that time. Hard to say how that would have evolved, I think I likely wouldn’t have felt comfortable sharing pictures of Han as he went through surgery but I imagine I would have written about it from my perspective.
For any future children, I will probably rediscover my interest in their privacy.
My son was born in 1984, long before the advent of social media. I did post a photo of him leaving the hospital in 2021 after a grueling five weeks recovery from botched pacemaker replacement surgery. So...part of his story belongs to me and to his dad and his sister and all those who love us. I don't think I would do a blow by blow account, but yes, his operations and hospitalizations were indeed the scariest moments of our lives and, no, there wasn't a tremendous amount of support. Indeed, there still isn't! The truth is, no one understands these journeys unless one has gone on one. So social media allows young (and old) parents to interact with people who are can understand. I do know that my son would never post anything about his experience on social media, or on this forum either. I wonder how many adults with chd would...that is why I find this blog so compelling!! Thank you for your thoughtful comments, Leigh, as always!
I was born in 1983, and my uncle literally had to use the card catalog of his law library to find any information on Truncus Arteriosus.
There simply was no support.
We were simply “fixed” and then told to go be normal.
I didn’t meet another person with Truncus until I joined a Facebook group and a parent reached out to me to see if we could meet.
It was huge, meeting this tiny little human who also had what I had, and his getting to know his mom helped me appreciate so much more what my own mother went through.
It turns out, we all needed support and understanding from someone who has been there.
I really appreciated this piece.
I think that the support groups that have popped up via social media are one of the only good things about social media.
But I am also glad that I did not grow up with social media.
Hi Leigh, I thought your post was rightly challenging for me as a mum of a teenager with CHD. I did post a lot on my Facebook page to keep friends and family updated during those early years. It was a great tool for them to understand what was going on and with lots of them having a faith for them to be able to know how to pray.
Thankfully my posts were limited to friends and I was able to keep photos private for them. But as I've been blogging it's brought things into light again about how much to share.
My son is now old enough that I can discuss things with him and have his consent to share things.
But it's a good question to ask and one for me to keep asking as I share stories about our family life.
This is really thought-provoking. My surgery was in 1998, so long before social media sharing. I really have no idea what things would've been like had that existed then.