When my little girl was about nine months old, I started noticing a worrying trend in her behaviour with other kids. I noticed how she’d put out her hand to play with other kids, but would quickly retract it when she saw the look of fear in their faces. You see, my daughter has Epidermolysis Bullosa, a rare skin disorder that is characterised by blistering or chaffing of skin, and her face was filled with open wounds that had scabbed making it seem that she was wearing the mask of Zorro… in scab form. Kids used to take one look at her and either scream and stare, or they’d simply turn tail and run away. I’d see the excitement on her face every time another walks by, and I’d sometimes silently pray that the child either doesn’t see her, or that she wasn’t in the mood to play, because how do I explain to a nine month old that they’re not afraid of her per sé, but that they’ve never seen scabbing of that nature on someone’s face before. How would I explain to her that once people understand her condition they’ll learn to accept her for who she is, but until then she’ll just need to be a little patient. How do I lessen the hurt she feels, every time this scene played itself out, and how would I reignite her self-confidence if ever it waned because of this. How would I ever delete the video reel in my head watching my daughter put out her hand to another child, and, upon seeing their reaction, slowly drawing it back to her side and lower her head into the side of my neck.
This went on for a while, until one day it didn’t happen at all. One day a child passed by us, and my daughter’s reaction was a slight strained smile. ‘Shattered’ can never describe that feeling. I watched, as if in slow motion, how she became more ‘anti-social’ and clingy and would refuse to leave my side for even a second. I saw my little girl become a shell of her former self, and in an effort to protect her from further emotional turmoil, I chose to keep her from other kids she didn’t know.
Months passed by in this manner, until one night in Ramadhan, I wanted to perform tarawih salah at Darun-Na’im Mosque in Wynberg. I knew the people there and I knew they’d welcome my daughter no matter what, but my husband had other ideas. He chose to go to Masjidul Quds instead, and man oh man, was I unimpressed!
But God works in mysterious ways and He used that evening to show me that keeping my baby away from other kids isn’t always the best of ideas. A group of about 7 girls walked up to us and asked what had happened to her skin. After I’d explained that her skin wasn’t as strong as theirs and that she got hurt easily, they were surprisingly very accepting and the next two hours were spent with my daughter having the time of her life because other children accepted her for who she was. I thanked God that evening for the blessings of a husband, daughter and loving and accepting people.
My daughter changed after that, and though I still harbor concerns that she may not be accepted, I’ve learnt to let it go and leave it to God’s divine decree. And in doing so, my daughter has prospered.
Mom always knows best.
God always knows best!
