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…

Lessons in wound care

“Mommy, is it a blister?”   She asks as I gently nudge at her skin. “No my baby”,  I reply. “I’m just putting your skin back in place”. It’s odd how commonplace this exchange of words has become. It’s just one of life’s things for us. But it’s also saddening,  because we cannot provide her with…

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…

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…

Pressured to feel

My youngest daughter drowned yesterday, and is currently in hospital in her first 24 hours in ICU. As I sit on my own, fielding messages and phone calls, I cannot help but be overwhelmed by it all. Not the situation itself, but all the ‘admin’ that comes with it. Fielding calls and responding to ‘how…

When water burns

Did you know that normal water can burn open wounds? I sure didn’t. And for some time,  I couldn’t quite understand why my daughter would insist that the water was burning her body. But it was, and it wasn’t because of the soap/s we were using, though they too played their part. Backtrack about a…

“At least you got to take her home. ” she said as she unpacked her son’s medical supplies which she’d offered to me after his passing. He was a beautiful boy, so strong and brave, a real fighter, barely even 3 months old when I met him. He was born with the same form of…

We forgot to do her hands tonight.

It’s 12:30 pm. Amatullah is on her way back to sleep and I’m left with the fatigue of what’s become my norm. She’d woken me up wanting to show me she’d somehow managed to undo part of her arm bandage and had removed the Mepitel underneath it. Bleary-eyed, and barely functioning, I stared at her…

First impressions count

When people see our butterfly for the first time, they generally have one of three reactions. They either : 1. Inhale sharply 2. Make a pained expression 3. Say shame And whilst I understand this to be a natural reaction, especially given the extensive wounds on her face, neck and hands, I also know that…

What difference does it make

If you asked me two years ago, if it mattered what kind of wound care dressings we used on my daughter’s skin, I would likely have shrugged my shoulders and gone on with life. Now, two year later, I would answer with an emphatic YES!. When we ran out of wound care three months ago,…