Tag: hope

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 …

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 …

finding JOY

This morning, I had had it.  You know, when you reach the point where you are just tired trying to do it all yourself?  I was there.  Actually, I’ve been there for a few days. The solution? Time with my best Friend. He’s not the kind of friend that will tell me I’m awesome just …

Guest Post: November the 5th

For the first time ever, I’m posting something I haven’t written myself!  A friend of mine recently saw to completion one of the most heartbreakingly joyful years of her life… and when I read what she wrote about it, I knew it needed to be shared as much as possible. So, if you are friends …

in memory

Last night, as I was tucking my three into bed, kissing sweet foreheads & pulling up blankets… Jesus won another victory over death. My grandpa’s earthly body died last night.  As my babies fell asleep for the night, he fell asleep and woke face to face with his Savior. Victory. His body had been ravaged by …