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[quote=Anonymous]As the parent of a kid with a life threatening medical condition, I have learned that parents with “healthy” kids truly cannot understand our journey. They may, for whatever reason, smugly think they have parenting and life figured out and cast judgment from their throne, but the truth of the matter is that they have no idea of the struggles and care routines we face and our children have to face. At the beginning, I felt obligated to justify or explain things, in hindsight seeking understanding or support, but this has lessened as we’ve been at this longer. I let my DD share information she wants shared (of course with the exception of sharing information to protect her safety) and have also had to endure the pain that comes from absolute cluelessness from others who can’t fathom life with a sick kid.

You are doing an amazing job and are your daughter’s biggest ally in this. I don’t always respond in the moment in the way that is wish I had, but rest assured my daughter is well aware that I have her back through it all. I’m really sorry that you had this experience—some people just stink (and lack the insight to understand that their behaviors aren’t helpful or even kind). That said, through our journey, I’ve also learned who we can trust and have seen the incredible kindness of friends and strangers. I emphasize these experiences with my daughter and try to move beyond the prior without too much rumination.[/quote]

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