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, I’m also very cognisant of the implications this could have on our family.
Our family policy is no photos on social media platforms -for more than just ‘privacy’s sake’.
Epidermolysis Bullosa (EB), though primarily a skin condition, affects so many other aspects of our daily lives, and many of these aren’t even known to our immediate family. Not because we dont let them in on it, but simply because they dont live the reality every day. Seeing and living EB are two completely different things. The only ones who experience the true impact of this condition, are my husband, daughters and I.
Social media has become a platform for bringing together families, friends and communities, a place to share special moments and concerns, a place to quickly spread word and assist when someone is in need. But not all of social media is good. Bullying, insensitivity and people who spew vile remarks are real and only once you’ve lived with EB long enough and encountered these things first hand would you truly understand our need to protect ourselves from this.
Not wanting to share our entire lives with the rest of the world doesn’t mean we ‘re in hiding. It simply means we choose where and when we want to be seen.
And though being in the public eye has us cringing, there are times like this when it is necessary. [Sidenote: of the many intentions behind doing this project was for us to learn to be grateful for what we have. For my daughter I wanted her to always be reminded that there are others less fortunate than her. Yes, she has a skin condition. Yes, it limits her from doing certain things. Yes, there are complications, and hospital visits and discomfort. But she goes to bed with a full belly every night and that alone is more than what most people have.]
For those who have recently seen our butterfly, you’ll know that the wound on her face is bigger than it was in the video, and that we very rarely use that wound care product anymore. And if we do, we do so knowing that it may cause her skin more harm than good, but it’s the ‘best’ option we have at that moment. You will also know that the clothing she wears covers her bandages, and that her body hasn’t been bandage-free since she was seven days old.
What you might not know is that the wound care product that used to work well on her skin, is now causing her more harm than good and instead, we use something called Mepilex Lite/Transfer which is generally better for her skin. But ‘better’ comes at a cost of R700+ per sheet of which we need about 1.5 sheets per wash, every second day which is besides the daily wound dressings we have to do to keep overgranulation and infection at bay. Oh, and did I mention that R800+ per sheet is the discounted price?
Anyway, this product has been the answer to my woundcare du’as, but to purchase them in the amounts that we require is too much for us financially at the moment.
So when a beloved sister approached us wanting to do a fundraiser for our butterfly, we deliberated for a while, and eventually agreed. We agreed because we knew that if we were going to expect from Allah and have conviction in Him coming through for us, which He will, then we needed to put in the effort first and then leave the rest up to Him.
The greatest challenge by far, in this situation, is keeping our reliance in Him.
The truth is, the need is there. But if we’re going to expect from other than Allah, and turn to other than Allah, then we’re completely missing the plot.
Perhaps my Allah is using our situation to teach us to rely solely on Him and to not allow the means of this world to take us away from The One Who provides the means. Placing our reliance in Him Alone doesn’t mean that we dont accept assistance from others, but rather that we first turn to Him for assistance and then trusting that He will send us the assistance we require, in whichever form He deems best for us.
