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…

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…

“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,…

A budget for EB

Our derm called me the other day asking me to draft a budget for kids with EB that goes beyond the wound care dressings. To be honest, I thought little of it until I made contact with the EB community asking what they believed to be necessities for EB care. Everyone’s first response: ‘a cure’….

The time has come

Date: Dec 2011 About a year & a half ago, I was asked where in the world I wanted to travel to. I mentioned a long list of places then added as an afterthought, “and of course Makkah coz Muslims need to perform the pilgrimage if they’re able to” Now… my heart yearns only for…

The worst of days

Today was a particularly bad day, EB-wise. I took off bandages for so long, that I started wondering if time had miraculously slowed down just for me. To aggravate me. To prolong the agony. Dear God, how has it come to this? I’m exhausted. I never want to have a day like this again. I never…