Tag: butterfly children

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 …

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 …

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 beach? That’s right!  Miss Julianne is a HUGE fan of the beach!  I …

a window to the soul

The eyes are the window of the soul English Proverb On February 18th, I saw a picture, yet another picture of a little one without a family. Around the same time, I found out that the little one who had previously grabbed my heart and twisted it around her sweet dimpled fingers had a family …

Baseball. Blogging. Bravery.

This week has been a whirlwind.  So many things happening at once, events I don’t want to forget.  So a brief post, mainly because I seriously won’t remember some of this later on.  This is for real.  My memory is SO BAD.  I’m chalking it up to a lack of sleep and freakishly busy season …