Epidermolysis Bullosa (EB) is a group of inherited skin disorders. The last week of October every year is EB Awareness Week.  Since it is known as “The Worst Disease You Never Heard Of”, we choose to share bits and pieces of… Read More

I used to believe that there would come a day when our family dynamic would feel “normal” –  that we would mesh together in a way that was seamless – that the memory of the time Before would be blotted out by… Read More

I got a box delivered to our house today.  It was sent by a friend and filled with wound care materials.  You see, this family found themselves with an excess of supplies when their six year old daughter passed away last week… Read More

“Mommy, I have another blister.  Can I pop it all by myself?” Her voice was so hopeful.  She knows what to do.  She’s watched us pop more blisters than I can keep track of during the two years we’ve had her home… Read More

“Mom.  One day, when I have good skin all over me, I can have earrings, right?” *gulp* Because, truth is, unless there is a radical gene-altering cure found, EB is a part of who she is, and will be a part of… Read More

Last year?  Last year we skipped her preschool Christmas program because last year?  It would have been too much.  Just. Too. Much.  She would not have been able to process the amount of sensory input flooding her system.  She would have freaked… Read More

If I could watch the world from the sidelines, I would. I don’t like being the center of attention, at least not for long periods of time.  It’s taken a decent number of years to be able to say “thank you” when… Read More

“The lavender is more rare,” he told me in the crowded marketplace teeming with voices and noises completely different from those I was accustomed to at home.  I glanced down at the little face, the rare butterfly who flitted into my life… Read More

She’s obsessed with knowing if she can do certain things, “when she gets bigger, like a mommy” Have kids Take care of her own boo-boos Make dinner Drive the car Do her own laundry Fix her own hair Miss Independent likes doing… Read More

We just got back from a little family vacation.  Didn’t go too far away, and have I ever mentioned how thankful I am to live within driving distance to the beach? I love the beach. And you know who else loves the… Read More