Everyone enjoys a day out with family. It’s what helps strengthen familial ties and allows one a chance to break away from The stresses of life. For my husband and I though, a family outing can be a very stressful experience. Here’s why:
Our daughter has a skin condition called Epidermolysis Bullosa Simplex, which, might I add, is the mildest form of this condition. For the past five months, her face has been filled with scabs which she ends up pulling of because it itches so much. People who’ve never seen her, or saw her only in the first three months of her life on earth, often gasp and cringe at the sight of her face, sometimes even visibly stepping away from her as if her condition is contagious. It’s not. Though I do understand the reason for their reaction. You see, she looks like a burn victim (or so some have said). The areas between her eyes and nose, as well as between her nose and mouth are filed with scabs. There are also scabs on her eyelids, which ‘grow’ Until just past her eyelashes and often look as if they’re going to scratch her cornea. She kinda reminds me of a Maori warrior sporting their black warrior paint with a full on black moustache to boot. It isn’t easy seeing her like this, especially when she scratches it all off and all you can do is stand by and watch the scabs reform (and hopefully stay on for longer than a day). Her skin has improved tremendously since its first occurrence, and whilst it’s a slow process, we are ever so grateful that things are getting better. Alhamdulillah (All praise is due to God).
So when my Maori butterfly warrior, her dad and I prepare for a day out, I mentally prepare myself for the inevitable stream of question that are sure to follow. “What happened to her face?”,”It’s it eczema?”,”Did she fall?” followed by “You know, my *insert relation here* also had a skin condition/eczema etc., and s/he’s doing much better now.” These are the followed by the most infuriatingly, frustrating question of all “Have you tried Dr. *Insert name here*?”. Our usual response is “No Aunty, Uncle, we haven’t.” We appreciate the well-wishes and advice, truly we do. But after struggling to clean baby’s nappy (with an extra pair of hands, mind you), after accidently pulling off some skin as we opened her nappy, and came across new blisters which we then had to pop and drain, and being utterly exhausted having just endured 20 minutes of non-stop crying as we held our daughter down and skilfully tried to clear her nasal passages from dried blood, which if we aren’t careful can cause more damage than good, only to have her (or us) accidently rip off a scab that was healing so very nicely, and ALL this whilst in a public setting, please understand that the last thing we need is advice. All we really need and want is a break; a few short minutes (or hours) to recover from the last 45 minutes to an hour’s ordeal.
As human beings, we advice others based on personal experience, and whilst this may work for other children, it may not work for my little girl. So whilst we’re (generally) open to advice, please know that not all advices/recommendations can be implemented as we have to ascertain what would be best for our little one. Rare though the condition may be, there are EB patients across the globe, who thanks to Facebook, are able to bounce ideas and advices received off one another and more often than not We find that advices from those with no EB experience can be detrimental to an EB patient’s health, for just as we cannot administer a cancer treatment for diabetes, so too it isn’t always practical to administer other skin ailment treatments for EB.
Just last night, in fact, we received two pieces of advice from people we knew, and whilst one was the general “Go to Dr. So-and-so”, the other advice actually raised my spirits considerably. Told in story form, the advice was as follows. There was once a man who suffered from a disease that no doctor could find a cure for. He was then advised by a scholar to distribute water (in charity) to others, and this is exactly what he did. Shortly thereafter, he was cured of his ailment and the doctors were stumped as to how that had happened. When they enquired as to how he had treated it, his response was that he’d been advised to distribute water, and through that he was cured. This story might seem unbelievable to some, but as Muslims, we are taught that giving in charity (as was done in the story above) can relieve one of one’s ailments and so we find Muslims the world over having done so from the time of our Prophet (May God’s peace and blessings be up him) until this present day. What I loved about this advice is that it wasn’t medical. It wasn’t a endorsement of yet another doctor or medication, albeit natural, that was sure to treat her condition. It was spiritual. This advice, when coupled with yaqeen (certainty) is the type that not only gives hope and alleviates difficulty and pain etc., It also increases us in belief. And it’s the one piece of advice my mom always gives me: give charity on her behalf.
It’s was a simple piece of advice, which was conveyed in a beautiful manner that made all the difference. And although we’ve given charity on behalf of our little butterfly before, henceforth we will do so with greater zeal and a greater expectation from God, for it is He Who said “I am to my slave whatever he (or she) thinks of me”.
To the sister (and her husband) who advised me last night, may The Almighty forever shower you with His mercy and forgiveness.
أحبك في الله