S/O Child loss, need opinions

[cricketwife]

I can understand why you would feel that way. I just read it as someone who has not lost a child and didn't feel it was insensitive. I think our experiences influence how we read this one. I do believe her when she says she was told half grow out if it and half don't. It really sounds like death was never brought up to her in her son's prognosis so she truly didn't consider it. I would try to cut her some slack. And I am truly sorry for your loss.

[anna7602]

I read her post as saying that no one ever told her loss was a possibility. 1/2 growing out of plus 1/2 developing a lifelong disability= 100%. And that coming to your group made her realize that these numbers aren't accurate.

[dancingirl21]

I think the part that gets me the most is where she says, "I didn't even consider the alternative", but maybe I'm reading too much into what she is saying there?

I can see how you would be offended, I think.

[Queen Mamadala]

I don't find it offensive, but it's a sensitive, tough issue, and sometimes our feelings are more raw than other times. I've been part of support groups for children with Down syndrome. There have been many, many times I get teary-eyed or weepy when I do see a child with Ds doing well, because that wasn't my first son's case. He didn't make it. His cardiac and pulmonary issues were too severe. But I also feel a sense of joy seeing these kids grow and flourish.

Like the mom in the OP, I also was not told about the other side, that some babies with Ds don't survive. 50% are born with a CHD, okay... but we rarely read or hear about the more severe cases. 

[osulori]

Jun 24, 2015 14:33:19 GMT -5 @mrsbecky said:

I do think it is a bit insensitive. Not cruel, because it clearly wasnt meant to hurt, but insensitive. I think maybe even if she had started off with that paragraph it might have been better? Instead it reads like, "look at my son!! oh sorry for your loss." I maybe would have sent her a message about it rather than commenting publicly.

This is what I was thinking.  I agree with you gravytrain225 that the admin was out of line telling you how loss moms feel, as if she speaks for the collective group which I am fairly certain is not the case.

[Queen Mamadala]

Jun 24, 2015 14:30:47 GMT -5 anna7602 said:

I read her post as saying that no one ever told her loss was a possibility. 1/2 growing out of plus 1/2 developing a lifelong disability= 100%. And that coming to your group made her realize that these numbers aren't accurate.

This is how I read it.

[Deleted]

I think it was a poorly worded way of saying she didn't know children died of HIE.

[jeaniebueller]

I didn't find it necessarily insensitive, just clueless. Sounds like she didn't lurk much around the group before jumping in? Or perhaps she wanted to acknowledge those of you who lost children and didn't know how to? That said, I definitely can understand how seeing a photo of a child who survived that kind of injury can be upsetting and she should have been more sensitive to that--I left a loss FB group for a similar reason.

ETA: loss/injury groups tend to be over the top about moderating comments, so that would annoy me as well.

[jennistarr1]

Jun 24, 2015 14:23:59 GMT -5 gravytrain225 said:

  I'm also annoyed that the admin can tell me what does and does not offend loss Moms.

I'm with you here!

[patbutcher]

Jun 24, 2015 14:38:33 GMT -5 @notquiteblushing said:

I think it was a poorly worded way of saying she didn't know children died of HIE.

Agreed.

Did she respond at all to your post?

[wavepool]

I saw this today, and thought her response should be the end of it... She wasn't sure how to say what she was thinking without being insensitive, and you are definitely entitled to your feelings over what she wrote. I think she tried to apologize or say she wasn't sure how to say what she wanted to say and thought both of your comments seemed appropriate, sharing your feelings.
That is out of line for the admin to send you that message and tell you how things should make you feel. I'm sorry for the whole thing: (

[wavepool]

Jun 24, 2015 14:40:52 GMT -5 gravytrain225 said:

Jun 24, 2015 14:33:19 GMT -5 @mrsbecky said:

I do think it is a bit insensitive. Not cruel, because it clearly wasnt meant to hurt, but insensitive. I think maybe even if she had started off with that paragraph it might have been better? Instead it reads like, "look at my son!! oh sorry for your loss." I maybe would have sent her a message about it rather than commenting publicly.

do the other loss moms feel the same way as you about it?

I talked to two other Moms who said they read it the same way I did.  I do feel bad for publicly posting, I really don't think she meant to hurt anyone's feelings.  I am half considering messaging the admin back later and defending myself.  My other thought is to just drop it and don't start anymore drama.

I think a response would be appropriate! It seems like you can respond without reaming her, and she should know that she can't tell people how they should feel.

[wavepool]

Jun 24, 2015 14:38:44 GMT -5 jeaniebueller said:

I didn't find it necessarily insensitive, just clueless. Sounds like she didn't lurk much around the group before jumping in? Or perhaps she wanted to acknowledge those of you who lost children and didn't know how to? That said, I definitely can understand how seeing a photo of a child who survived that kind of injury can be upsetting and she should have been more sensitive to that--I left a loss FB group for a similar reason.

ETA: loss/injury groups tend to be over the top about moderating comments, so that would annoy me as well.

This group is a little different because it's closed and you get a message upon joining that you need to make an intro post within a certain amount of time, with specific info included, so I can see where she might not know exactly how to intro.

[Susie]

I can't really tell what she means by "the alternative." On my first skim through, I read it almost like she refused to consider "the alternative" to the outcomes presented, i.e. losing one's child, and that somehow felt smug to me, like as if other parents somehow didn't refuse the alternative hard enough. But re-reading, I think maybe she meant "the alternative" is lifelong disability, and she didn't realize kids died of HIE? It was badly worded either way.

[Deleted]

You are entitled to your opinions/feelings as long as you expressed them in a respectful manner (didn't flame her to hell right away), which it sounds like you did. I would tell the admin so and leave it to that. And yes, it's annoying she told you what is/isn't offensive. She's acting like the board/group police.

[hermione]

I would respond to the admin and say, "Admin or not, you don't get to decide what I find insensitive."

[mlt]

Yes, it's insensitive. Just like when someone says "I can't imagine" to someone who is grieving. Really? You can't imagine? I always want to respond "you've got a poor imagination then."