I nearly cried the other day. I was almost in tears due to very severe tooth ache. I recall constantly asking God to relieve me of this pain as it was seriously affecting my ability to do anything that day. All this changed when I had to change my little girl’s face bandage. We’ve become …
I won’t lie – being an EB mom isn’t easy! It isn’t easy to stand by and do nothing whilst my little girl cries because she wants to drink, but her blood clogged nostrils do not allow for drinking and breathing at the same time. It isn’t easy having my little girl scream blue murder …
Just the other day, I had the rudest awakening of my life to date – my daughter fell head first out of her pram! As her mother, I should’ve known better than to leave her unattended in a pram that had no front bar to keep her from falling out. But experience had taught me …
“Mommy, I want to scratch!” says my little girl’s hands every time she plunges them into her bandage clad legs. “Mommy, I want to scratch!” cries her fingers every time they reach for her chest, back, head or neck. “Mommy, I’m itching!” says her face every time she rubs it against me attempting to make …
Dear well-meaning society When you ask to hold my daughter for the first time and I seem hesitant, please don’t feel offended; I am merely looking out for her well-being. Those close to our family, and who’ve been with us from the beginning of our EB journey will tell you I’m not trying to be …
You’d think every bandage change is the same for an EB mom. Sure, every mom and child is different, and their wounds blister and heal differently, but you’d expect mom to know what to do – but not this mom. Not this time. Until now, I’ve never really had to apply any mepitel or bandage …
These past five months have probably been the easiest, most difficult experience with Epidermolysis Bullosa. My daughter’s face has been filled with scabs for the longest time, and whilst scabbing isn’t necessarily a bad thing, in her case… well… her scabbing wasn’t normal. With her scabbing, or crusting as the doctor put it, there was …
