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 …

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 …

I’m going to tell you a story, and it’s a story several years in the making.  It’s the story of two women, one who had to let go of control a bit and accept some help, and one who wouldn’t stop asking how she could help. /// Ever since coming home with our daughter from …

Saying Yes to Giving Grace

**It was a privilege to be able to share this part of our adoption journey.  Some times when I write I write to process information in my own head and heart.  This time, the processing has been completed, and completed a while ago.  This writing is different – it comes from a place of wanting …

About this time last year, I was in discussions with the principal at the school my children attend.  The discussion revolved around the potential need to add another 2nd grade class during the 2017-2018 school year, and would I be interested in thinking about a full-time job? Honestly, the thought of working full-time hadn’t crossed my …

  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 …

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 the Present, that thoughts of the Future wouldn’t always be accompanied by some …

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 …

“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 …

“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 …