No more Ms Reactive

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 someone doing it, somewhere. But alas, many enquiries later, I conceded defeat and resigned myself to the fact that tanning sheepskin may not be meant for me this year.

I had plans for that sheepskin,  I did. I planned to have them tanned and treated so that EB patients like my daughter could live (and rest) a little more comfortably. I planned on using some to make specialised sheepskin products for my daughter and others like her so that they could live blister-less. I planned to gift excess sheepskin to other EB parents, in the hope that it’d have a positive impact on their lives (as well as their pockets).

Caring for an EB patient takes a lot of time, energy and resources,  and the last thing you’d want is to add an extra load of worry on an EB caregiver’s shoulders. Having a loved one with EB means that the you’ll probably need a fulltime caregiver in the first few years of your little one’s life. The sad reality however is that many EB families rely on medical aid, government hospitals, such as Red Cross and the like, and charity events for their supplies, which by the way costs an average minimum of R500 per bathtime on the best of days. And whilst many of us are fortunate enough to receive our supplies gratis, it doesn’t take away from the reality that there are so many EB caregivers that are either fighting with their insurance companies for basic EB care so that they can live more fulfilling lives, or living under a pile of debt as a result of the supplies they so desperately needed but were/unable to afford.

For those who have seen the effects of my daughter’s EB peeping through her bandage-clad face and legs, you’ll know that her skin has improved dramatically, by the grace of God. What you probably don’t know, is that, if we were not under Red Cross Memorial Hospital, we’d be paying R500 every second day for her face bandages alone. That’s besides the other medical supplies, specialised clothing and footwear, the OT and food she needs to consume. And we’re of the lucky few. Other EB patients are experiencing so much worse than us; from constant infections, to other internal blistering and complications, the list is almost endless. And it is precisely this that has led to my realization last night.

My Islam teaches me to be proactive, and to assist my brethren as best I can. Sheepskin may not be a big deal to many, but to EB patients it’s the difference between blistering/chaffed skin and sleeping easy. It’s the weight of concern lifted from the caregiver’s shoulders, even if only for a little while, in the knowledge that their little butterfly is less likely to blister with the sheepskin padding, whether it be for sleeping, playing, learning to crawl or walk.

My prophet Muhammad (peace be upon him) taught me that the best of people are those who are most beneficial to others, and that The Almighty will be in the assistance of His slaves  (that’s us) as long as we are in the assistance of our brethren. And what better to be of assistance, than to aid those who are very rarely aided by others.

And so, with conviction in my heart, I vow to no longer be reactive. I vow to no longer live life going through the motions of EB. I do not want to watch on helplessly as yet another butterfly is born and I’m unable to do anything to assist them. Come this time next year, I plan to have measures and infrastructure in place so that we are able to tan as many sheepskins as possible, so that more families can rest a little easier at night. I plan to give back to my community that has so selflessly invested in me. Ameen.