Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.  Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it. As a special need mom, I’ve had experiences where I had to fight like anRead More →

We live in a world that has become overly hateful and judgemental, even plain rude, and to me, it’s a direction that needs to be reversed. If there is an America we need right now is an America that is more kind. More understanding. More willing to give the benefit of the doubt. More willing to try to see the other’s point of view. If we’re not willing to do that, than we need to follow the rule we allRead More →

Caregivers are selfless and do what they do because they love the person they care for, most often without monetary compensation. If you know a caregiver and want to show your appreciation, here are some ideas: Encourage him or her to relax by a gift of bubble bath items Pay them a sincere compliment Take his or her kids to the movies or out to the park for the afternoon Don’t compare their life or their loved one they areRead More →

I wrote about this subject before, but today I came across this website that made me laugh out loud… mainly because their message spoke to me. Take a peek at these sympathy cards by Emily McDowell, here’s one on the right —> It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. And I am the kind of mom who isRead More →