If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better. When you have a child with a “terminal” condition, however, (Nicky has the Recessive Dystrophic form of Epidermolysis Bullosa-Hallopeau Siemens subtype) a child that gets worse and worse all the time, when I hear that somewhat canned statement, while on one hand I appreciate the kind thought, on the other hand it reminds me of the undeniable truth. Yes, I can “hang in there”, sure, but things will not get better. Ever. The only thing I get to look forward to is watching my son get worse and worse. I can’t even think beyond that. I already buried a son, my mind is prohibiting me to go “there” for self-preservation.Read More →