Just a quick note – I just updated Nicky’s blog at CaringBridge… I talk about his recent struggles, results from his biopsy and camp stuff. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I recently came across this BLOG I wrote for the EB Info World website a couple of years ago and I thought it really belonged here, so I am reposting it. Many blessings to everyone and keep reaching for the stars!               Help! I have a blister!   I couldn’t help but be amused the other day while visiting Target by one of these little packets containing Hydrocolloid Bandages. I was amused by two reasons: 1. Obviously amusing is the fact that I would need to get hundreds just for one week’s worth of bandage changes for Nicky. Ha Ha 2. Weirdly amusing is the fact that every doctor will tell you that unlessRead More →

I must admit, it’s not easy for me to post photos of Nicky’s wounds. When I do, I put them here on my blog so there is no chance of them getting deleted by some jerk who thinks I am exploiting my child. When this happens, and I was called this just recently, I am deeply hurt. Then again, these people who are so quick to judge, don’t have a rare disease nobody cares or knows anything about. I have to say I am developing a thick skin about people’s judgement. Long gone are the days where I could not sleep because of someone’s words cutting me deep. They still hurt, but I have to put it all into prospective, consider the source. Ignorance plays a big role, people that are ignorant of your troubles are so quick to judge and dismiss. It’s very sad, but I am not losingRead More →