Why is the house so dark?

One hobby that kept Maryam, my daughter, stay distracted throughout her illness was drawing and painting. It was obvious for people to call her a born artist after witnessing her artwork. Beaming with passion to create every artwork unique, she would work intensely in isolation, even in the hospital during the treatment. Lethargic with the strong doses of chemotherapy to fight brain tumour, she would make sketches to express her pain and sometimes paint a hope to be healthy someday. Her natural talent became the only tool that could make her travel in the world of imagination where she found happiness while playing with the colours and express herself. I found peace to see her oblivious to her surroundings while enjoying her passion in the toughest time but she was incognizant of Allah’s will.

Maryam continued to paint and draw despite the recurrence of tumour which was gradually affecting her vision. She complained several times about her weak vision which was hindering her activities. While consulting the doctors, we were informed that tumour was spreading and degenerating the veins responsible for sharp vision, causing blurred vision. With that said, the doctors declared that it was incurable. The news added to the suffering.

Maryam’s struggle to focus while drawing was real. It sometimes ended up in frustration and sometimes in giving up but she somehow managed to continue since the passion to express herself through art was beyond any logical explanation. However, one day, life was so cruel when she woke up and asked, “Mamma, why is the house so dark?” I felt a wreck. It was destined to happen but this early? She lost her vision. I was frozen, paralysed and worried about how to explain this grim reality to her. I shut the door behind her and cried my heart out. Life couldn't be more merciless. It was not justified that life was lessening the alternative choices she could have to distract the continuous pain.

I empowered myself at the weakest point of my life when I realized that knowing is never equal to accepting. Fundamentally, very few of us experience this journey. The journey that starts from knowing our worst situation and its limitations and then accepting it. Acceptance comes with the courage to know that we are unable to change our situation and be content with Allah’s will. I witnessed the inner hollowness of my child. She accepted the fact but to see her bound to bed and couch every day and staring at everything with empty eyes was killing. I asked mercy of Him and He replied, إِنَّ مَعَ الْعُسْرِ يُسْرًا - Indeed, with hardship [will be] ease (94:6). I made this comprehensible to Maryam. Though difficult for a child to comprehend its meaning completely, she made an effort to understand it. She often asked questions and I answered patiently. While struggling between the state of knowing and accepting, she would affirm, mamma, it will be over soon, right? And I would embrace her and say surely it will, my love. And one day, it was over and she found peace when her soul departed from this world and I was sure that she will be happily painting in the heaven above.