Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. The past cannot be changed, it can only be accepted. Real friends heal, they really do. If Nicky’s existence has taught me anything is not to judge situations I’ve never been in. The only thing I can do is be there for that person with an ear to listen and armsRead More →

I’ve been working “not exactly diligently” in digitizing all my old VHS & 8mm videos and it’s a tougher project to do that I initially realized. I would have wanted to be done by now but it’s become very hard. I am very far from being done. It’s not hard doing the digitizing per se, that part is very easy. I connect the video camera (or the old VHS player) to the computer, start my little program, then press playRead More →

September 1997 – The Theme for Nicky’s nursery was Pooh as it’s painfully obvious! I love how I set up this photo in his crib with all the Pooh characters. And that smile… it just melts me all over… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 306 CommentsRead More →

In exactly 10 days Nicky will be 20 years old. I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow baby was surely precious and wanted and cared for in ways I am not yet sure I managed to ever master. Yes, I am still learning. Nicky didn’t come withRead More →

I’ve been kind of “out of it” the past several days since the election. The day that followed I was in a daze. I cried and I couldn’t stop. The man that made fun of a disabled reporter was now president. What was I going to tell my disabled son? The man that hates immigrants was now president. I am an immigrant. But I am white, so I’m OK? Right? If I was “brown” I would not be, I wouldRead More →

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel guilty about them. I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding. EB is one of those conditionsRead More →

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 aRead More →

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out often because our voice can drown in the sea of worthy causes. The rarity of some like EB, however, makes it very unlikely that enoughRead More →