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. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know norRead More →

The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so painful for him and she can’t touch him at all. My worries however, had to take a backseat when she said something to me youRead More →

Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips: “What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these. The truth is… I don’t know. As a parent of a child who is medically fragile (to say the least), I don’t know what my son’s plan is, or what he will do. He would like to do things, but on most days it’s aRead More →

I remember clearly being sick when I had a “regular job”. It was pretty simple, really. I would call in sick and I would stay in bed all day. I even remember with sadness when I left work when I started bleeding when I was 7 weeks pregnant back in late 1995-from there I went to the Doctor who did an ultrasound and could not detect a heartbeat and sent me home on bed rest. My employer at the timeRead More →

I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is that this condition exists and it’s horrible. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine aRead 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. Nicky in the end is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming a better person. I would love a weekend away with my husband to feel like a wife and a woman, but an EB trained nurseRead More →

This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. 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. While you stare at my child, is it too much to ask you to smile? A little smirk? A Wave? Small talk? “Hey kido,Read More →