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I came across a reddit page yesterday that deeply disgusted and disturbed me. The title of the post was this: “If I found out my child had that (EB), I would kill them in their sleep.” This is sadly not the first time (and it won’t be my last) where I encountered ignorant comments from people that are just, well, ignorant. As if the lives of children with EB have no value, are unimportant, have no purpose and no place. As if living with EB is simply a burden to erase without a single thought. I call them ignorant because this is not THEIR child, THEIR flesh and blood they are talking about. Would they really kill their own child in their sleep? Would they really face me in real life and tell me this? Of course not. And the Internet raises its ugly head this way once again. In the anonymity ofRead More →

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Sometime ago I decided not to be angry anymore. I didn’t want to be angry at EB and what it was doing to my son. I was done blowing my lid over things I had no control over. I was tired of being depressed all the time. I was tired of being overwhelmed. I was done with all of it. I wanted to smile. I wanted to be happy. But how could I? I was on a journey. I was also tired about being offended at stupid crap that did not change my day to day life, and also done with defending my point of view about things. My beliefs are my beliefs, I don’t need to get into an argument with someone nor belittle anyone else for not having the same beliefs. This also meant I didn’t need to shout my beliefs through the rooftops to make sure they wereRead More →