Tag: EB

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… Read More

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…. Read More

there is nothing wrong with her

You saw my daughter today when we were out at Costco.  I was just by the meat counter when I noticed you, noticing her. A few steps further, I picked up a container of blueberries, my daughter’s favorite, and noticed you, noticing… Read More

a rock and a hard place

EB is awful. Any type, all types, all severities. It’s awful. It’s pain, it’s itching, it’s discomfort. It’s anxiety, it’s fear, it’s unpredictable. It’s never ending research, it’s trial and error, it’s learning lessons the hard way. Today, EB has me feeling… Read More

joy in the trial

Trial (n.)  the act of trying, testing, or putting to the proof A week ago, Julianne started a new medicine.  It’s in the final testing stages needed to have approval for the general marketplace.  We don’t know if she has the real thing, or if she has a placebo.  We’re trying… Read More

a look into the future {EB Awareness Week}

Seems like EB is getting more attention in the media these days.  Often, the attention is focused on the kids, the “butterfly children”.  I get it.  Seeing kids suffering in the way that so many do is heartbreaking and gut-wrenching.  I see… Read More

then & now {EB Awareness Week/Orphan Sunday is coming… get ready!}

Yesterday we had Julianne’s 9-months-home pictures done.  True, it hasn’t been quite 9 months since we landed home-sweet-home on Texas soil, but… close enough, right? Got to thinking yesterday afternoon that it was the 9 month marker of one of the days… Read More

when prayers are answered {EB Awareness Week}

This summer I wrote a post for No Hands But Ours where I shared my thoughts about being a Prayer Mama. The first little one who made me a prayer mama flashed on a computer screen in front of my eyes before… Read More

Pay It Forward! {EB Awareness Week}

Epidermolysis Bullosa is a really easy condition to educate others about.  It’s so… out there… no avoiding it.  People see her, they ask questions, we answer questions. The questions and comments are a part of our life, and believe me, we’ve heard… Read More

an identity worth having {EB Awareness Week}

EB is not who she is. She just happens to have EB. Who is she? She’s a daughter, a friend, a sister. She’s a granddaughter, a niece, a cousin. She’s sassy, funny, and never meets a stranger. She’s fearfully and wonderfully made…. Read More