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Every now and again I get an email or a message from people I know and even from strangers telling me they’ve followed Nicky for X years and follow this blog and offer me  kind and compassionate words and I do not know why, but I am always surprised. Shocked even. It’s really nice to know people do listen. People do care. While I started this blog as self-therapy, most of the time I don’t think anyone will read it. I know it sounds strange, but that’s how it is. Then again, this probably has to do with the fact that I’ve kept a diary since I was 12, so this is just an extension of what I’ve been doing for 40 years. When I was a teenager, I was extremely shy. I always think that was my saving grace and an amazing trait to have at that age becauseRead More →

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For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes.  The death of my child changed me in ways I cannot ever explain nor express the monumental importance of. When you hear a bereaved mom mention the name of their child in heaven, just listen. I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tired because their mind is? Post Views: 1,498Read More →

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Sometimes explaining EB and/or my life it’s exhausting. People that truly ought to know better, surprise me with their selfishness, with their eagerness to let me know “they have it bad too”, even though, when the chips are down, they wouldn’t trade their life nor their child with mine in a million years. It’s called empathy. It’s called listening, TRULY listening without feeling the need to compare or feel the need to put your 2c in. It’s sad when people that go through the trouble of asking me about my life don’t really want to listen, they only ask to make conversation and try to relate, even though that can’t possibly be done, unless you have a kid with RDEB as well. Yes, it’s hard to work full time and needing to leave work to pick up your teenagers from school. Guess what? I used to work full time and then IRead More →