Every time the president speaks, I feel my anxiety increase. The skin on my head tightens, and my body goes into fight or flight mode. By the end of his speech, I have sensory overload, and with that comes a short fuse and a need to isolate myself from my anxieties and thoughts. Every time …
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 …
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 …
Whilst scouting for a place to tan sheep skin this week, I happened upon an important realization; in this field called EB, one cannot be reactive! I never thought finding someone to do sheepskin tanning would be so challenging, I mean, I know sheepskin is sold at selected outlets in Cape Town, so there must be …
After what feels like an intense battle of wills and “don’t do that’s” I feel replete as my daughter lay at my side suckling away. There are days, like today, where I feel this EB vibe is just too much for me to handle. Throw in a bit of teething and the fact that my …
Two months have passed by my dear one and I still think of you. I remember those first moments, having just found out that your dad and I were expecting another bundle and your sister another sibling. And though I didn’t ‘feel’ ready for another one, I knew that you were a gift from Allah …
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 …
