It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder. Here’s 10 things this EB mom wants you to know… 1. Yes, it might looks like we have it all under control, and most likely it is. That doesn’t mean we wouldn’t like some help. Even if that just means a kind word. We appreciate those more than you know! 2. Taking Nicky anywhere is very hard. We are often invited to places or events that are hard to get to for him. We wish people would visit us more, is all. I understand this is hard with COVID, but this was true even beforehand and will be true after. 3. We find ways to be happy. It may not be what looks like happiness to many, but we’ve figuredRead More →

This morning I hated being an EB mom. “Hated” is such a mild word to describe it too. Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and bleed profusely. As he was crying in pain I had to change all the bandages on his bottom and upper thighs which were green, apply healing ointments, cover and wrap as much as I could. Thank God I had morphine to give him. He is sitting peacefully playing his game now, and I can’t get over it. I am still shaking. I then came across an article from a special need mom and something she said struck me as something I could not relate to at all. She said:”I would not change this journey for the world, as it hasRead More →