Reflection, thoughts, and heartbreak.

Well I know its been a while since I have written anything. A lot has happened since my last post. I went to Cincinnati back in March to meet a beautiful baby boy named Evan with EB. His mom probably through I was a crazy lady because I could not stop crying. My heart ached when I looked at him. His mom was so nice and sweet. I got to talk to her and learn more about EB. Since than I have also became a member of a site called ebfriends. There I have met a lot of beautiful people with EB. You know I sit here thinking how ungrateful sometimes we can be as humans. We complain about the dumbest things and don't realize how lucky we are. This whole experience has made me sit down and put my priorities straight.

Why this blog?

I was very surprised when I actually created this blog. I never though I would do it. Well I did it and I did it for a few reasons. One is I would like to share my feelings about life and be able to express my inner thoughts. Second to bring awareness and try to help find a cure for a horrible disease.

Awhile back I came upon a blog (which I won't mention since I have not asked permission) of a family that had a preemie baby. She had all the odds against her but she was a fighter she gave it her all. Unfortunately, after months of fighting for her life she passed away and in that blog I came upon other blogs. Those blogs were about families that had babies with different health problems. In my mind I asked God why, why is there so much pain in the world. I think I cried for awhile because my heart could not handle it.

One particular disease has caught my eye. Epidermolysis Bullosa, I think this is the worst disease in the world. Don't get me wrong all diseases are horrible but this one this particular one kills me inside, makes me angry and has made me want to fight and help find a cure. You may ask why, because I am a mother and I can't even imagine what all EB moms and family have to go through in a daily basis. I read and I learn but I am not them and I am not going through what they are right now. Being a mom is hard as it is, now imagine being a mom with a baby that has a disease that causes blisters and pain and there's nothing you can do to make them go away.

I am so blessed and now I want to give back. I want to make people aware of this disease and I want to help raise funds. A good friend of mine has told me about Debra.org, they are a great organization and I wish you can take a moment to go there and learn about EB and how we can help.

I think this is for now, but I will continue to post and try to come up with ideas to help with EB, maybe you can help me with that.