I came across this blog this morning and it gave me pause… It spoke about the sacrifices of a special need parent and what’s involved, which include depression and problems with self-worth among others pressing issues, such as isolation and financial problems. I saw myself in this post… the myself of a few years ago, and how low I felt. The lowest low one can ever imagine. I can’t help but feel that special need parents, as a community, don’t getRead More →

… and just like that, it’s over… We got back from Italy late last week and I am sitting here pondering how it went so fast. But the truth is, it didn’t. It didn’t feel fast, I can still feel the warmth of my family and the beauty and love that surrounded me. And while the trip was rough on Nicky, he’s glad he went. The flights we took to get there were from Los Angeles to Paris for 11Read More →

My trip to Italy with my boys is scheduled for Monday and I couldn’t be more excited. I saved 4 years for this trip! I can’t wait to hug my mom and dad and of course, everyone else! The next few days I will be making sure we get everything we need for our trip. The other day I filled a suitcase with Nicky’s bandages. Not all bandages, mind you, just “some”… well, most. I still need to add somewhereRead 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. It’s also very important to note that EB is just an umbrella word. A word that throws together all blistering conditions no matter how they are inherited or how they manifest themselves. Back in the late 1800s/early 1900s, when the words Epidermolysis Bullosa first appeared, the Doctors told patients they hadRead More →

It isn’t every day that a TV show surprises me, in a good way, nonetheless. I am a late arrival at the “Game of Thrones” obsession, and the one thing that I cringed about prior to watching the first episode was how they were going to portray their “little” character, Tyrion Lannister. Normally anyone that is different that is cast in a show is there as a “token”, so-to-speak. Having a “different” child has made me very sensitive to thisRead More →

October 2002 – A fun memory of Disneyland with Nicky, almost 6 years old. We spent the day with a couple of other EB families and it was a blast. It’s fun to remember the good times too. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 248Read More →

When Nicky was born I was told of anemia being an issue with RDEB (Recessive Dystrophic Epidermolysis Bullosa). With this knowledge I gave him Ferrous Sulfate supplements as suggested by his pediatrician thinking that would fix it, but somehow I was unaware of how serious anemia could really become. It wasn’t until he was 7 years old that he was tested for iron levels and we found out his levels were so low they were “borderline lethal”. Talk about scary. ItRead 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. 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 payRead More →