Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, andRead More

A Work In Progress

Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water, food, clothing, let alone bandages and medicine. At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor in Hollywood, we all want to love, to laugh, to dream, to eat and drink and a roof over our head. We’re more the same than we are different. There are people out there though, that cannot survive on their own,Read More

And I thought *I* was going crazy!

I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting disgust at all the lies being told by one Pinocchio who flip flops every two minutes depending on who is listening. At least I can look forward to that being over in a month. All I know is that I had to stop drinking wine, or my occasional bottle of Vodka because I felt I could not cope changing my son’s bandages without it. Only now I feelRead More