Amatullah and MM

Four Decembers ago, Allah gifted us the opportunity to distribute a few punnets of food in Manenberg. Allah! What a heartbreaking experience that was. Realizing the need, we made the intention of distributing food there monthly in the hope of bringing some relief to the people living there. But I also had a bigger niyyah,…

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…

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…

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…

What happens when we run out

We ran out of wound care last week. Ran out as in ran out. No Mepilex,  No Mepitel, no Urgotul. Nothing. And the hospital didn’t have anything for us either. This past two weeks were intense wound care wise. I was expecting a parcel of wound care to arrive from someone but that didn’t pan…

In light of the fundraiser…

In light of the fundraiser being organised for my daughter’s wound care needs, we’ve had requests from individuals asking if her photo can be passed around to others in the hopes of raising more awareness and so that people can see where/to whom their money is going. Whilst I understand the reasoning behind this request,…

A lasting impression

“Look there! A beast!”, he exclaimed as he pointed to my little girl sitting in her pram. He couldn’t have been older than five years old, but his words still stung. My daughter was in hospital for yet another iron infusion, and I’d taken her down to the kiddies playground for a little bit. “Dear…

After an exhausting day

Yesterday was exhausting. And as is expected after an exhausting day, we all fell asleep, except…we forgot to do my daughter’s hand bandages. You see, our little girl has started requesting hand bandages at night as she realises she harms herself less when they’re on. Itching at night, is almost like an invitation to scratch,…