“Mommy, I want to scratch!” says my little girl’s hands every time she plunges them into her bandage clad legs. “Mommy, I want to scratch!” cries her fingers every time they reach for her chest, back, head or neck. “Mommy, I’m itching!” says her face every time she rubs it against me attempting to make it feel just A LITTLE BIT better. “Mommy, help me! Let me scratch!” her body wails every time I prevent her from harming herself. It’s now reached such a point where I’ve decided that she rather experience little to no sense of touch (I’m having gloves made for her), than to rip open her skin time and time again.
I have days where my baby and I ‘play’ tug of war for hours as I try to keep her from scratching herself. Some days though, fatigue gets the better of me and I let her be, praying that she won’t do herself too much harm. And just as quickly, I fight through the tiredness as I cannot have my little girl harm herself because of my selfishness. It’s tiring, but oh so worth it.
Blistering and chaffed skin are a part of my life now, and though it’s exhausting, I am eternally grateful for it. Before EB, scratching was as natural a reaction to me as breathing, and I’d never have imagined preventing my daughter from it. Now, I find myself in a constant tug of war, caught between a rock and a hard place – a very hard place. How do I deny my daughter her need to scratch knowing full well that’s one of the best ways to still the itch? And yet, how can I allow her to scratch knowing that it’ll cause blistering or rip her skin off all together. Before EB, I took healthy skin for granted. I never once thought of the great ni’mah (favour) it was and so I never thought much of taking care of it.
EB has taught us how to care for one another, and be tolerant and merciful during our most challenging times. We were tested with patience and the lack thereof. We were taught the meaning of perseverance and tasted its sweetness after a long haul. Our year long journey with EB hasn’t been a breeze, but the lessons we’ve gleaned therefrom were priceless.
So whilst we battle with the endless itching, scratching, and tug of wars, I take comfort in the fact that my Rabb (Lord, Nourisher, Sustainer) has gifted me with the tools of faith to help us navigate through these trying times. I take comfort in the knowledge that life is merely a test from God and that He will never burden an individual with more than he/she can bear.
