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 nurse to provide child care is nonexistent. I made peace with that. Being compared to others does something to our self-esteem that is extremely damaging.. I don’t particularly enjoy seeing him in more pain, but he has decided long ago that having his hand somewhat functional is vital and important to him is worth the pain. Make sure your advice is wanted and asked for. It may seem common courtesy, butRead 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 →