Empathy Matters

I wrote about this subject before, but today I came across this website that made me laugh out loud… mainly because their message spoke to me. Take a peek at these sympathy cards by Emily McDowell, here’s one on the right —> It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. And I am the kind of mom who is flipping DESPERATE and will try just about anything, yet some of the emails with suggestions I’ve gotten over the years border on the absolute ridiculous, bordering on insanity. Want an example? “Burn his skin, it will regrow withoutRead More

Special Siblings & Social Graces

I was just thinking last night how sweet and compassionate Connor is with Nicky. He is very patient while I spend an hour almost daily helping Nicky with his homework, about two hours every night changing bandages, about 45 minutes at night putting Nicky to bed, and another 45 minutes in the morning to get him up for the day. I have to help Nicky to get dressed, to the bathroom, I have to get him water, pain meds and the list goes on and on. I was a little frustrated the other morning and didn’t hear Nicky throwing up and Connor came in to hug me and to let me know he gave Nicky some water andRead More

Thinking positive…

Those that know me, know what a quote freak I am. I draw a lot of inspiration from them and they truly help me in many ways. It all started back in 1993-I was on a flight from New York to Milan, Italy to visit my family and the gal sitting next to me was a beautiful 19 year old girl traveling solo to a modeling shoot with a teddy bear and a picture album. We struck up a conversation and she opened her little picture album to show me photos of her family members and one thing struck me. Under every photo she had written a quote. But… not any quote. Each quote pertained to the photo.Read More