Life with EB

New beginnings

Over the past few months, my husband and I have been trying to work on a website for our little butterfly hoping that it could be a means of raising awareness about her condition, but also a testimony of the life lessons and faith she's taught us, but somehow... we just couldn't manage to get… Continue reading New beginnings

Life with EB

EB parenting is hard

This EB parenting gig is hard. I just finished doing patchwork on wounds where mepitel had come off, or was too wet to leave on. This after bandaging her feet, but not before noticing that her toes were fusing together. And this after she complained that her feet (wounds) were stuck (to the bed/blanket) and… Continue reading EB parenting is hard


Between hope and fear

I won't easily forget the first moments I set sight on my Maryam after she'd drowned. She was semi-white, limp and drenched in water. I remember taking her from my father's arms, running into the house and trying to do CPR on her. I remember running out of the house with her to the doctor… Continue reading Between hope and fear

Life with EB

The boy I loved

I'd never been that hurt before, not the day after my c-section, not when I first unknowingly separated my daughter's skin from her body, nor when I lost my second child via a miscarriage. And though all these incidents were painful in some form or another,  nothing compared to the heartbreak I felt at the… Continue reading The boy I loved