I know that I'm not technically a parent of a chronically ill child anymore but I thought this article may resonate with those who are:
http://www.huffingtonpost.com/beth-whitley/damaged-goods_b_6980494.html?utm_hp_ref=parents&ir=Parents
Hope you are all hanging in there!
kiwi / 714 posts
You will always have a right to post in this section and I cant imagine anyone would disagree.
blogger / pomegranate / 3044 posts
@Ms.Badger: Thanks for posting! This stuck out to me:
When the odds of something are one in 10,000, only the pessimist would assume that their child will be that one. We didn't, why would we? But when you get those odds once, it becomes hard to shake the idea that it could happen again. If we're not, after all, immune, what else can attack us?
Rightly or wrongly, this thinking permeates everything that comes after. In many ways, it can be a positive lesson: don't take things for granted, celebrate what you have now, find joy in the tiniest of steps. But it is in an incredibly fine line between the positive life lessons and the damage: a fear of celebrating the good things in case they are taken away; a tendency to imagine worst case scenarios almost constantly; a terror of allowing yourself to relax, even for a second, because this will be the exact moment when the worst happens.
Also the chronic mamas club has lifetime membership, sorry dear, you're stuck with us! 
Seriously though, as long as it doesn't turn into a pity party I personally welcome all HB members to post on here, especially if they find articles like this one!
pomelo / 5607 posts
The part @Mrs. Tiger quoted jumped out at me as well. We haven't dealt with chronic issues, but after having something SO unlikely happen, it's hard not to wonder if you'll "beat the odds" again. Our first m/c was very unlikely, because we'd seen a strong heartbeat already, so I already felt that way a little bit. After R, and winding up in such a bizarre and unlikely situation, it's hard to trust that things will go okay in the future.
clementine / 918 posts
@Mrs. Tiger: That's exactly the part that hit me too. I KNOW that it is extremely unlikely that this baby will be sick , but I can't shake the fear and I think some of that fear will always be with me. And I don't know quite how I feel about that.
clementine / 918 posts
@Torchwood: I thought about cross-posting in Loss because I think there are similar elements in parents who have experienced a loss that affects their outlook in a similar way
pomelo / 5607 posts
@Ms.Badger: A lot of it definitely applies. I'm not sure how different it is having to deal with things daily for a lifetime, versus just the brief time during the loss. I would think it's harder, but I don't know how it would effect me differently.
persimmon / 1178 posts
@Ms.Badger: Thanks for posting. I needed it.
I am having a very funky week because LO got sick Sunday night and it had all the signs of being one of her bad ones. Called the pedi, work, Mom (to watch the dogs cause DH works graveyards), got everything lined up and then nothing....it never peaked. She didn't need emergency intervention, just some steroids (for airway swelling) and Motrin for the fever. So, that is great, right? Really, really great.
But I am in this state of suspended anxiety, like I went to the top of the roller-coaster but never went down.
This: "...a terror of allowing yourself to relax, even for a second, because this will be the exact moment when the worst happens."
And this: "....made me aware of so many conditions and possibilities, so many more dangers than I had ever dreamed possible, that I feel it would be presumptuous to declare my children are 'fine'. I add the disclaimer: 'As far as I know'."
cantaloupe / 6687 posts
@Mrs. Tiger: that second paragraph resonates with me so much. life is so fragile and if I stop too long to think about it I can't breathe
@Ms.Badger: 
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