It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely depressed, suffer from anxiety or are somewhat… how shall I say this? A bit egotistical. Everyone is out to “get them”. Just this morning I read the news of aRead More →

I am so glad Nicky and I survived last week because it was exhausting. Monday and Tuesday I drove us to Stanford and back with an overnight stay. One way is 6 hours. I was trying to explain to my parents how amazing but tiring this trip is for us. I love driving, always did. We have our “stops”, our routines. I’ve come to know certain rest areas like the back of my hand, and certain truck stops are very coolRead 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. EB is one of those conditions that needs to be SEEN to be understood. I wanted to be known for what I LOVED, not for what I hated. I suppose in this life we need to recognize who cares about us and make sure to spend time with them. Anyone thatRead More →

I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck behind his computer, Nicky can do anything and everything he could never do in real life. Online Gaming and watching videos is part if notRead More →

As many bereaved moms know, the grief over the loss of our children is not something we can ever “let go”, “get over”, or “forget about it”. We understand that it may be uncomfortable for people when we mention their name, but the wrong response to hearing our child’s name is not one of these somewhat canned statements that pretty much tell us to stop talking about it. I could not forget holding my dead newborn if I tried, so toRead More →

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 →