Tag: butterfly children

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

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

What Does Life with EB Look Like?

What does life with EB look like? It looks like swinging on swings at the park. Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type,… Read More

halfway through the summer with EB

Caring for a child with Epidermolysis Bullosa is one of these things that requires a pretty hefty learning curve.  As we are now 5 months home with Julianne, we’re still very much in the learning stage.  I mean, we do have a… Read More

July Gifts {Day Four}

A gift in RED, WHITE, and BLUE!! This girl is celebrating her FIRST 4th of July!  When I saw this red, white, & blue butterfly shirt a while ago, I snagged it and saved it for today. For those not, “in the… Read More

a little bit butterfly, a little bit fish

Today was a first for our little spitfire.  We took her to the neighborhood pool, and well, she loved it! She loves bath time, so I wasn’t worried about her being afraid of the water.  We took it easy, letting Dad walk… Read More

EB & expectations

Recently all four kids were out playing in the front yard, and riding bikes in the cul-de-sac.  We moved to this house in the middle of last year, and the bigger yard and bike-riding space has been a gift for my outdoors-loving… Read More