Our Butterfly is a Beach Bum

July 5, 2016 by nohandsbutours epidermolysis bullosa, Skin Conditions, Whitney 5 Comments

beach

(Alternately titled: Taking a Child with EB to the Beach) Our family loves the beach. The sun, the sand, the salt-water burning in our eyes. The souvenir shopping, the jellyfish spotting, the ritual of going to eat ice cream on our last night of vacation. Taking that first glimpse of the ocean at the end …Read More

Our Butterfly Child

September 15, 2015 by nohandsbutours epidermolysis bullosa, Family Stories, September 2015 Feature - Skin Conditions, Skin Conditions 0 Comments

butterfly1

I grew up in a third world country where the exotic butterflies are exquisite! My favorite had wings like brilliant sapphires on thin blankets of black velvet. They would flit by in glorious beauty and no matter how many times I saw them, they still took my breath away. It is hard to describe something …Read More

What Does Life with EB Look Like?

September 3, 2015 by nohandsbutours epidermolysis bullosa, September 2015 Feature - Skin Conditions, Skin Conditions, Whitney 0 Comments

eb

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, …Read More

Prayer Mama

July 5, 2015 by nohandsbutours epidermolysis bullosa, orphan ministry, other ways to care for the orphan, Whitney 2 Comments

prayermama

There are adoptive families of all sorts. Families who adopt and have biological children. Families who have only adopted children. Families who adopt more than one over several years. Families who adopt two at the same time. Families who adopt only one. Families who knew from the start that they would adopt one day, and …Read More

Binding Her Wounds: Adopting a Child with Epidermolysis Bullosa (EB)

March 12, 2015 by nohandsbutours epidermolysis bullosa, Family Stories, Skin Conditions, Whitney 7 Comments

whitney

Our journey as a family into EB adoption started with eczema. True story. Out of the three biological children we already had, two of them had big time problems with eczema. So, when one day I was scrolling down the waiting child list on our agency’s website and saw “dermatitis”, my heart leapt. Dermatitis? I …Read More

Gia: Adopting a Child with Epidermolysis Bullosa (EB)

March 4, 2015 by nohandsbutours epidermolysis bullosa, Family Stories, Skin Conditions 3 Comments

Family

When my husband and I began the adoption process, we knew we were open to adopting a child with special needs, but we didn’t have any specific need in mind. We had a very broad medical checklist, and we planned on getting our LID and having our agency match us with a child. But then …Read More

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