I won’t lie – being an EB mom isn’t easy!
It isn’t easy to stand by and do nothing whilst my little girl cries because she wants to drink, but her blood clogged nostrils do not allow for drinking and breathing at the same time. It isn’t easy having my little girl scream blue murder in my ears for thirty minutes straight as I try clearing out her nostrils which have once again clogged with blood. It isn’t easy asking family members to hold down her hands and head as I carefully wrestle out a stubborn piece of dry, clogged blood from her tiny little nostrils, using toothpicks and other such dangerous items. Sometimes I wish I didn’t have to use potentially harmful items, but experience has shown that these items help best, provided that my little girl is held down firmly, with her only defence being her heart-wrenching cries. And once her nostrils are cleared, her wounds doctored and her face bandage replaced, it is heart breaking to watch her reach out for anyone besides her mom to comfort her. And so there are days when it all just becomes too much and I end up feeling as if my insides are buzzing as a result of the stress, and it takes me a while for all of me to be in sync once more.
This happened again today, and it somehow reminded me of an incident that happened early one Friday morning sometime last year. My daughter was about four or five months old at the time and I remember placing her onto our blanket as I prepared for class (something I didn’t usually do since she had open wounds at the back of her head), only to discovery, some twenty minutes later, that her head had gotten stuck to the blanket. And so the following twenty minutes were spent trying to ‘snip her loose’ without having any skin accidently rip off her head. It wasn’t easy having to do it alone (my husband had left early for work that morning), especially since I still had to deal with open skin in her nappy area as well as a big blister that needed popping. Yup! Life with EB sure ain’t easy!
But this worldly life isn’t meant to be easy, is it? For why else would The Most Wise, The Most Compassionate promise us that He would test us in various forms, and encourage us towards patience during those trying times [Qur’an 2:155]?
Trials are meant to strengthen us and teach us in ways that times of ease never could. So often we complain of the bad hand we’ve been dealt, forgetting there are others who are going through far worse than we could ever imagine. We also seem to forget that God Almighty does nothing in vain, and though painful at times, everything He’s gifted us with was meant to teach us a lesson, so as to protect us from a far greater calamity.
This simple truth dawned on me this evening as I watched my little girl lay sleeping in my arms. I realized that this very condition is such a great favour from The Most Merciful to my entire family and I. For had He not gifted her with this skin condition, I would have been so absorbed in everything baby that I would’ve been unmindful of Him, and in doing so perhaps she would’ve grown up unmindful of Him as well. And it is exactly this that He warns us about in Qur’an when He says “Oh you who believe! Do not let your wealth and children divert you from the remembrance of Allah. And whoever does that will surely be of the losers.” [63:9] SubhaanAllah (Glory be to God, Who is free from all imperfection)! How merciful is Allah to have gifted us a (not so) minor worldly trial, so as to redirect our focus towards Him in order to save us from an even greater trial in the Hereafter
Allahu Akbar. ❤