Tag: EB

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. ūüėČ ¬†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 …

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 completely at a loss. Julianne’s type of EB often does better if the …

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 …

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 them and I want to do something to help… ANYthing to help alleviate …

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… …