Tag: Epidermolysis Bullosa

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 …

Photography Friday (on a Saturday)

I’ve been really good about sticking to my resolution to back off of social media this summer.  This week has been refreshing.  I played with the kids more.  I read more.  I took more pictures.  I scrapbooked.  I DID more.  Because I was scrolling LESS. It’s pretty awesome. Remember my DIY phone jail?  It’s a …

road trippin’

Lots going on in the medical part of our journey with Julianne.  Sometimes I feel like we’re on the road trip of a lifetime, you know, the kind that takes a lifetime. 😉  Because let’s be real.  Road trips aren’t always sunshine and daisies, but you can learn some good stuff when you’re stuck in …

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 …

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 her. A few steps further and you were right beside us, staring down …

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 it out, testing it on her skin, looking for proof that it does …

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 of my life that will never leave my memory; the day we visited …

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 we even knew that adoption was going to be a path we would …

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 pretty much everything out there. just in case you have every wondered… NO… …