I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re not dealing with a fixable problem, one that we have the hope of treating and moving on. This is our life, 24/7 and for the foreseeable future unless a cureRead More →

Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me of the opposite, I choose to just live my day without comparing. Do not let anyone tell you that is foolish to have hope. It’s what keeps me going. HopeRead More →

Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity party by sharing my pain and struggles — by sharing, I think I help open minds to what Epidermolysis Bullosa looks like.  The problem with the scarred areas is thatRead More →

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s formRead More →

Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.  Read More →

As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to be had, it’s over. Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching.Read More →

Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane? Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition isRead More →