When water burns

I sure didn’t. And for some time,  I couldn’t quite understand why my daughter would insist that the water was burning her body. But it was, and it wasn’t because of the soap/s we were using, though they too played their part.

Backtrack about a year ago, I remember having some sort of infection on the fingers of both my hands. I cried everytime I had to soak it in salt water because I knew it would burn and I could feel my every limb respond negatively to the reaction the salt water had on my fingers. And yet I pushed through,  knowing that after the burn, will come the relief and a possible cure. I could do nothing for myself, and it wasn’t even all my fingers that were involved. But I distinctly remember thinking of our butterfly and wondering how she manages to endure all that she does. I also remember looking forward to running cool tap water over my fingers and thanked Allah for His (not so) small mercies.

Back to the present. My daughter screams everytime I run a little water over her, crying that it’s burning. I did some research and it turns out that she isn’t the only EB patient experiencing this; others experience it too. And that the salt water that burnt my fingers might actually be calming to her open wounds.

In addition to our water burning issue, I’ve also come to realise that our shower’s pressure is too much for her fragile skin and whilst we, the general masses, revel in its pressure, the pressure can actually harm her.

And even something as simple as brushing her hair can cause blistering in her head if we aren’t consciously careful (ie. that we try our best to not let the brush touch her scalp, or only slightly touches it to avoid friction and blistering, that the skin on her head doesn’t ‘lift’ and blister when we’re trying to brush out a tangled section, and that we avoid touching her ears and neck at all costs so that we don’t aggravate the wounds  already present there).

It made me realise that there are many things in life we take for granted. Some are the obvious,  everyday things, but others, like these, are gifts of Allah that we don’t even realise are gifts.

It was a simple realisation, but these experiences make me appreciate that everyone has their own battles, and just because it doesn’t seem like a challenge to you, doesn’t mean it isn’t a massive challege for them.