What would you do if the unthinkable happened

Posted on: Sat, 01/20/2007 - 8:20am
McCobbre's picture
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I've thought about this alot. And now that Kailey's mom has posted, it's really given me pause.

The questions that we ask/assumptions we may make when we learn of a serious reaction could really look insensitive. I feel awful--I've asked those questions, too. Of course, it's all in the name of trying to figure out what went wrong so we can try to avoid it ourselves. We all know that we make errors in judgement, that things go horribly wrong even when you are doing the right things day in and day out. Even when you have a plan for a reaction. Sometimes, things are out of your control or in the heat of a reaction, something goes wrong. Many of us have been there before, although fortunately the consequences haven't been fatal.

But I think about this alot--and don't really know about the wisdom of posting this now--but I've thought, "What if the unthinkable happened?"

I would post about it here--hopefully before anyone picked it up from the news. My anonymity would obviously disappear. And then I would have this request: please do not hash this out--I would disclose everything I know, but please don't make assumptions or speculations. Because I think that would really hurt. Like I said, I've thought about this a lot. I would want people to learn from it, but on my terms.

In addition to some one or two charities, I've thought about picking pa.com as a place to direct memorials. But that would depend on whether it's a 501(c)(3). I mean, I don't know of another place that enables people to learn about food allergies like pa.com--and that's including FAAN (I did donate to FAAN last year through a workplace deduction--and received a hand-signed thank you leter from Anne Munoz Furlong, BTW). If not, then I'd probably direct memorials to a PA research project.

Anyway, those are just my thoughts, morbid though they be (and although my username might suggest otherwise, I'm typically not morbid).

Posted on: Sat, 01/20/2007 - 9:00am
onedayatatime's picture
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Y
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Sat, 01/20/2007 - 9:20am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

This is one of the only truly "taboo" thoughts for me. I can think about a lot of unpleasant and even horrible things. But not that.
I mean, I know that I love my spouse, but I also know that my life would go on without him... never the same, of course, but I wouldn't feel that my very [i]purpose for being[/i] had gone...
when I try to pursue that thought with DD, however, it literally takes my breath away. Really. To the point that I know that anything I can imagine at this place in my life would be totally irrelevant to the person that I would be then.
I hope that I would have enough of my sanity left to share whatever was useful. But I seriously doubt it. I've experienced a lot of terribly dark things in my life-- things I would never wish upon another human being. But losing her would be beyond all bearing. I have no other children to 'carry on' for.
I think of myself as a strong and very brave person emotionally. I'm not afraid to consider pretty much everything-- total analytical personality. Able to be almost frighteningly detached about just about anything. But not that.
The answer is that I have no idea what such a thing would do to me-- I don't know that my fundamental nature would survive. I'm pretty sure it would not. Maybe it's the experience of having lost immediate family abruptly that gives me a glimpse into that dark world. I don't know.
While I am interested in others' answers, this is a very troubling question for me.

Posted on: Sat, 01/20/2007 - 9:25am
McCobbre's picture
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Yes, well, I didn't get into the existential muck, did I? Yes, I'm too afraid to touch that. Perhaps that not fair--to ask and not be able to go the distance myself. I've only thought about the practical things. The mechanical things.
My sister lost a child to leukemia. I don't know how to deal with that even now, all those many years since.
I cannot imagine anything more totally devastating.
You know--folks, you don't have to respond to this. As I said, I was unsure of the wisdom of bringing it up. It's just to hear from someone who has been touched by this personally, it shakes you to the core. To the very ground of your being.

Posted on: Sat, 01/20/2007 - 9:48am
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

Nathan Walter`s dad posted on this board after he died. The tone was quite different from the recent post. He did not seem to be offended by people`s questions and actually was quite open, wanting to do anything possible to prevent the same thing from happening to another child. There was another person who posted, a family member after a young man in his 20s died from anaphylaxis. The young man died about a year ago after a reaction in a restaurant. Again he was very open and not at all bitter.
About the media, they don`t know unless someone calls them. If the unthinkable did happen to dd, I certainly would not be calling them. I would not want the whole world knowing about it, although I would probably post here, knowing that others here would want to know.

Posted on: Sat, 01/20/2007 - 9:48am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Actually I am erasing it. The thought of being quoted and having no control over who uses that quote scares me.
I do not think the family in the other post was slammed. This is how we learn by the experiences of others as well as our own.
This is a necessary question, not morbid.
I might erase this...
Peg
[This message has been edited by Peg541 (edited January 21, 2007).]

Posted on: Sat, 01/20/2007 - 9:53am
perpetually perplexed's picture
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Joined: 02/12/2005 - 09:00

We should be focusing on the positives not the what if's.....that's just way too depressing as if this allergy isn't depressing enough.
PP

Posted on: Sat, 01/20/2007 - 10:08am
McCobbre's picture
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Joined: 04/16/2005 - 09:00

Just want to add for Carefulmom and Peg--I didn't go back and reread the post about Kailey's reaction. So I wasn't being specific or pointing fingers. I just know how as a board we behave in general--in similar posts (not a loaded word--I'm thinking in a sociogical sense). We want to know details and we ask questions. I have, too.
I've just been thinking that if something ever happened that I probably would rather not have the questions and stuff. And so I would want to be forthcoming but wouldn't want to read about people second guessing, you know?
PP's right in many ways. And I do focus on the positive. But since I read that other thread, I just got to thinking more.
Some things put fear into you.

Posted on: Sat, 01/20/2007 - 10:10am
onedayatatime's picture
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Joined: 09/11/2007 - 09:00

I
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Sat, 01/20/2007 - 11:08am
Sandra Y's picture
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Joined: 08/22/2000 - 09:00

If my son died from his peanut allergy I would never post about it here. In fact, I would never again look at this site because I couldn't stand to read a discussion of it.
The threads on this site following a PA death are very disturbing to me. I find them deeply offensive, all the speculation and the implied criticism of the parents and caretakers.
There's a kind of smugness to some of the posts, an implication that this wouldn't happen to us because of X, Y, or Z. Those threads always make me angry and I've always known I would never post here if my son even had a serious reaction.
Sometimes this doesn't seem to be a support board. Sometimes it seems like a one-upsmanship-board, like I'm a better mother because I do X, Y, and Z and other parents don't take it seriously enough. Even if this is not the intent, sometimes it can come across that way.
I think it's extremely important not to hurt another parent who is in agony over the death of their child. For this reason, I think any discussion or speculation about the events leading to a PA death should not take place on a public message board. If people absolutely have to discuss it with someone, it should be done through IM or email so there is no permanent record online and so that no family members of the deceased could be hurt.

Posted on: Sat, 01/20/2007 - 11:26am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

I hear what you are saying, Sandra. I think this has gotten [i]better[/i] over the years, as members have realized that this [i]is[/i] a public forum and that these peoples' families can and [i]do[/i] occasionally see those posts. Less like a members-only club.
I don't think that we are exactly "smug," though I can see why it could seem that way. We do pick it apart. The reason is that it is truly mindbending to allow your brain to fully comprehend that it could happen in spite of doing [i]everything[/i] right. [i]Everything.[/i] So most people look for ways to set themselves apart from that outcome using rationalizations about why that couldn't happen to them.
Part of it is trying to distance ourselves emotionally from something that is too close to home. Part of it [i]is[/i] a genuine need to learn what we can. We hold on to the notion that knowledge and control is power over this thing, almost like a talisman.
We all learn from one another about hazards/safety measures that we would NEVER have thought of on our own.
But the ugly truth that it really COULD happen to any of us, any time...this is scary and almost unbearable.
I think McCobbre's question is a good one. Could I stand it? If not, why not? Am I doing something that I wouldn't want done [i]to[/i] me? I don't think [i]I[/i] am, at least I hope not... but I do see things I wouldn't be comfortable with.

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