Tag: Epidermolysis Bullosa

new adventure!

Hey there, faithful Life-Into-Likeness followers! You are unlikely to find me in this place over the course of the year.  I’ve committed to a new project called EB 365.  The goal of the new blog is to chronicle our family’s life with EB thrown in the mix every day for a full year. I have …

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 her disease has done to our family life. I wish with every fiber …

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 our life with our butterfly, Julianne.  She is a gift to us from …

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 due to complications from Epidermolysis Bullosa. I had avoided talking to Julianne about …

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 you were waiting to be six.  But now, you’re here!  You’ve arrived.  You …

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 with us. “I don’t know, J.  The needles are very sharp.  How about …

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 who she is for all of her days. Epidermolysis Bullosa (n.) :  loosening …

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 I know that sucker is ready to come out, and tune out the …

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 complimented… hidden, unseen, invisible is what I have preferred to be. And then …

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 and knew the circle of lavender is what I needed. One day, I …