Tag: Epidermolysis Bullosa

transparent

I’m a mess about 95% of the time. I get angry really easily. I truly and with a deep and abiding passion HATE the disease my daughter has to live with. I truly and with a deep and abiding passion HATE what… Read More

if I could choose…

  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

in memory

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

six!

Today?  Today we celebrate the fact that you are now SIX!!! You waited a long time to be six, my girl.  It seemed like a much longer wait that the norm, probably because your older brother was six during the whole year… Read More

a big first!

“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

Earrings in Heaven {World Rare Disease Day 2017}

“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

a toothy sort of tale

In my house, I am the puller-of-teeth.  Something about it gives Hubs the eeby-jeebies and he just cannot handle it.  I, on the other hand, posses the necessary personality traits to get ‘er done… namely, the ability to keep on yanking when… Read More

visible

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

lavender jade

“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

butterfly on the beach

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