Blog Quotes

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 tiredRead More

Quote on Being Supportive

We are all ill equipped to judge situations we know nothing about. What we can do is be supportive. Listening is the most important thing I tell everyone to do. Offer to help, acknowledge, respect. ~Silvia Corradin Post Views: 151

It’s Exhausting…

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 RDEBRead More