Tag: EB Awareness

new adventure!

Hey there, faithful Life-Into-Likeness followers! You are unlikely to find me in this place over the course of the year.  I’ve committed to a new project called EB 365.  The goal of the new blog is to chronicle our family’s life with EB thrown in the mix every day for a full year. I have …

transparent

I’m a mess about 95% of the time. I get angry really easily. I truly and with a deep and abiding passion HATE the disease my daughter has to live with. I truly and with a deep and abiding passion HATE what her disease has done to our family life. I wish with every fiber …

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 …

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 …

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 …

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 …