Dear God… (letter from an EB mom)

Dear God

I woke up to what felt like a horror movie this morning. My daughter’s face was covered in blood, her eyes shut tight because of it and her nose whistling as the air tried passing through their clogged passageways.

I waited an hour before cleaning her face, thinking it better for her to be well rested when I commenced with this difficult task. I knew I’d have to work swiftly, but be gentle at the same time, lest the pressure of wiping causes her to blister, or worse, pulls off the scabs and her skin along with it. When the first zamzam soaked cotton ball touched her skin, she started crying whilst withering to and fro trying to escape it. Things became so intense that I eventually had to pin her down in order to get the job done. So, with my legs on her body, my hand holding hers and my face pinning hers down to keep it from moving, I eventually managed to clear her nostrils with a syringe followed by cotton balls on all the other areas. Nine cotton balls, a syringe, a scissor,  a lot of crying and a half an hour later, her face was clear again, clearer than I’d seen it in a long time. By this time she was exhausted, and lay almost motionless as I snuggled into her neck and silently sobbed. In that moment I wanted nothing more than my husband’s support and assistance, for none but him knows the extent of the helplessness and pain one has to endure. As I held my daughter down with all my might, I prayer that incidents like these wouldn’t scar her for life. As I pinned my shrieking daughter to the bed, I wondered how she could still be holding her arms out to me, when I was the one causing her unimaginable pain. Dear Lord, You Alone know the heartbreak a mother endures for the sake of her child, and You Alone can provide the cure.

Bloodied cotton balls and syringe used to clean baby's face.
Bloodied cotton balls and syringe used to clean baby’s face.

“Brave up mommy!”, called my conscience from somewhere afar,  “Baby’s nappy still needs to be changed”. So with diaper necessities at the ready, I go about opening up her nappy and cringe as she yelled in pain. Unbeknown to me at the time, her nappy had gotten stuck to her skin and my opening it up resulted in me pulling off some of her skin. Not wanting to cause any further damage, I tentatively tried cutting around the nappy-skin area whilst trying to pin her down once more and dodging flailing arms. I let out a huge sigh of relief after that, only to see the blister.  Glad that she was too tired to move, I quickly popped her blister then proceeded to clean the rest of the nappy area. This was especially tough since it’s covered in blisters… but You already knew that. I was so relieved when it was all over and I could finally feed my baby to sleep. As I lifted her from the bed, I saw a puddle of blood where her ear had been and quickly turned my attention away only to find another pool of blood soaked into the bedding where her head had spent the night. As if sensing my dismay, my little butterfly turned to me… and smiled.

Dear Lord! Thank You for the eyes You’ve given me; eyes with which to behold my daughter’s beauty. Dear Lord, thank You for my hearing, with which I able to hear my daughter’s cries for help. Thank You for pain receptors which helps my butterfly tell me when something is hurting her. Thank You for my every limb, the functions of which are too much to mention. Dear Lord! Thank You for all the little things I take for granted, whether it be the air I breathe, the family, support or possessions I have, or the fact that You gifted me with life once more. Thank You Lord. Thank You.

With love from

An EB Mom

2 thoughts on “Dear God… (letter from an EB mom)”

  1. JazakAllah for sharing, ukhti. And for all the invaluable lessons you have taught me through all of it. It is terribly painful to read each of your updates — though obviously not anywhere near as painful as it is for you to live it — but at the end of it I am always grateful that I had read it, because I always come out at the end of it more grateful. Alhamdulillah.

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