tag:blogger.com,1999:blog-8988524040957212858.post3346906750676438813..comments2023-03-30T08:44:55.822-04:00Comments on Funambulism for Beginners: Children DieUnknownnoreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8988524040957212858.post-3612724682215745322013-11-20T10:04:57.056-05:002013-11-20T10:04:57.056-05:00And that is one of the harder things in dealing wi...And that is one of the harder things in dealing with a child suffering from a life-threatening illness--having to censor yourself because family, friends, and others think that you are somehow giving up hope by thinking about the possibilities or the probabilities. So much so, we convince ourselves that it is not correct to worry about the what-ifs or to share when it gets really bad. That is why this blog was born, so that I could have a place where I could have my own feelings and not be told I'm wrong to feel them. I don't think acknowledging that life-threatening illnesses kill takes away from life; rather I believe it empowers us to treasure life all the more.Melhttps://www.blogger.com/profile/11148983594692927783noreply@blogger.comtag:blogger.com,1999:blog-8988524040957212858.post-61672530835056404882013-11-20T08:57:36.547-05:002013-11-20T08:57:36.547-05:00I'm one of those parents who plays the mental ...I'm one of those parents who plays the mental game that says, "Well, my kid is different from that kid who died because of X or Y reason, or because my kid's horrible disease has A or B variation, and that'll make her outcome different." In my head, though, I know it's just a game. The reality is my kid has a terrible disease, and no matter how great she's doing now, there's nothing separating her from kids who've died except luck. We've drawn a lucky hand so far, but we know things could -- and probably will -- change at some point. We know she could die, and we do our best to carry on despite that knowledge. What we don't do anymore is share this fear with family, all of whom deny that death is even a *remote* possibility for our daughter, and who act almost offended when we bring it up. Sigh.Anonymoushttps://www.blogger.com/profile/02699264500402016143noreply@blogger.comtag:blogger.com,1999:blog-8988524040957212858.post-57165189146029784712013-11-19T23:00:57.882-05:002013-11-19T23:00:57.882-05:00I do indeed believe that living life to the fulles...I do indeed believe that living life to the fullest is important, but I get really upset when I see parents having to hide their own feelings and fears because it makes other people uncomfortable to think about children dieing. It's not fair to the parents or the child. And it hurts so much.Melhttps://www.blogger.com/profile/11148983594692927783noreply@blogger.comtag:blogger.com,1999:blog-8988524040957212858.post-9601653061290485412013-11-19T19:02:18.677-05:002013-11-19T19:02:18.677-05:00It is important, I think, that they live fully unt...It is important, I think, that they live fully until they die. I believe you think that as well.<br /><br />Best,<br />BonnieFrom the Kitchenhttps://www.blogger.com/profile/00789641912016566894noreply@blogger.com