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 …
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 …
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 …
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 …
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 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, …
“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 …
If I could put all that I feel into words, your heart would not be able to contain all that I have to share. You’ll never know how lucky you are, to be able to see your beloved’s face throughout the day. It’s been just over two years since my daughter’s facial wound appeared, and …
Blood-soaked bedding, this is what we wake up to on the daily. Sometimes it’s more, other times less, but this blood-soaked bedding is only a fraction of the blood my daughter loses daily. Sometimes I wonder “what’s the point of it all?”. Why try to prevent my little girl from scratching during the day when …
Apart from her EB, I’d always thought my little girl to be quite healthy. What! With a healthy appetite and a healing body, why would I think otherwise? Until I heard those five words, that is. I’ve always known I was anaemic, but to hear that my daughter may be too was a bitter pill …
