Tag: EB

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.  Exactly how she is. “Fearfully and wonderfully made.”  THAT is her identity. She …

EB Awareness Week!

Today is the kick-off of EB Awareness Week. If you’ve read my blog for a while, you know what EB is. If you’re fresh to the awesomeness found in this corner of the internet, you’re about to find out what it is! If you’re reading this because you have a child with EB and found …

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, one thing that I have noticed about kids with EB, and their families, …

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 bit of a routine, and I have learned how to handle the wound …

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 know”, the butterfly is often used to describe children who have the genetic …

Protected: pink shoes & cake

There is no excerpt because this is a protected post.

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 her over to the shallow end to try it out.  Once she realized …

a wonderland

Yesterday I mentioned that it was good that we had two days of filling up the love tanks because today was going to be a new experience.  And, as per the norm, new experiences are FUN (until they aren’t any more!). We had the chance to hang out with other Texas EB families today.  It …

fruitful {how to deal with the EB questions}

When we’re out with Julianne, she draws people’s attention.  This is inevitable, and we were aware that this would be the case for our family.  We have a beautiful family… but the fact that Julianne looks different from the other children doesn’t escape the notice of others.  In addition to the obvious differences, we knew …

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 children. It’s also that season where spring sports are in full swing, and …