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,… Continue reading After an exhausting day
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… Continue reading The worst of days
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… Continue reading It’s the little things…
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… Continue reading Helpless
Close your eyes and imagine falling on your knees and scraping it so badly that it opens and bleeds. You try cleaning it but it burns to the touch leaving you in tears every time. You try asking for help, but no-one is able to assist you, because no-one knows what to do with a… Continue reading Why raise awareness?
When my little girl was about nine months old, I started noticing a worrying trend in her behaviour with other kids. I noticed how she’d put out her hand to play with other kids, but would quickly retract it when she saw the look of fear in their faces. You see, my daughter has Epidermolysis… Continue reading I feared for my little girl
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… Continue reading When left untreated