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. Time and patience have brought me a long way. I have a sense of peace about things that is hard to explain sometimes. I try my best to own the pain so it does not own me. I kept my personal bankruptcy, which resulted from our insurance company refusing to pay for supplies and other things a secret because I was so incredibly embarrassed and mortified about it. But the secret is out. I am not longer embarrassed or mortified, I am mad as hell. Just as every person is different with their talents and gifts, so are those with Epidermolysis Bullosa. Everyone is different. Respect. Listen. Care. Until there is a full-fledge cure, bandages are key and nobody can affordRead 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 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 nor learn. Not sure I mentioned lately how much I hate EB. There you have it. I hate EB. This grief thing is just bizarre. I rarely think of Alex and cry anymore, good gosh, it has been nearly 20 years since his death, but sometimes feelings resurface and I am a mess. It is what it is, I guess. It’s “okay” I tell myself. I am human. Most people don’tRead 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, having a good day?”, anything will do. I promise you, he won’t bite. I have learned that life is far from fair and we would be better off flinging that thought as far from us as possible. EB is relentless, does not stop for anything nor anyone. It’s a struggle to keep fighting at times, but we will keep fighting. For the past 19 years we tried it ALL-bandages, noRead More →