How a Muslim mother of a child with disabilities struggles through grief.

I’m a mother. I’m blessed with six precious children. I’m an average Muslim striving to do my best to earn Allah’s Pleasure. Allah has prepared me for unimaginable hardship as He guided me through grief. The day I met my fifth child I saw a miracle. It was the day when my life changed. That day I received a gift from Allah, the Giver of Gifts, as He gave me a chance to get closer to Him and to earn His blessing, mercy and guidance. 

It was 2 o’clock in the morning when I was woken by pain in my tummy. I woke my husband up and began packing up my bag. I was 36 weeks pregnant with my fifth baby. At 3 am my tummy started feeling so tight and hard. I remember warm tears coming from my eyes as I tried so hard to bear the pain. By 3:15 am we were at the hospital. When the midwife checked my baby, she said that her heart beat was weakening. Immediately, I felt worried when she said, “Quick, we have to save the baby!” as we were rushed to the theatre to do an emergency caesarean.

At 4 am, 9 years ago, my baby was born with a severe brain injury. She was born without any heart-beat. The medical team did CPR on her. They informed my husband soon after she was born. A few minutes after, a nurse came again and told him that our baby lost her heart beats. “What do you mean?” my confused husband asked the nurse. Alhamdulillah, Allah grant back her heart-beat after the second CPR. Both of us were taken to the ICU. When I woke up, my husband who was by my side uttered the news that no mother would hope to hear. Allahu Akbar! I was shocked and shaking. I felt nothing. “Please tell me that this is not real.” 

The doctor revealed that I had placental abruption, meaning my placenta separated from my uterus wall before my baby was born. They found bleeding and blood clot in my uterus. There hasn’t been any explanation as to why and how this happen. My pregnancy was normal and I had no complications prior to giving birth. 

I remember the day I met my baby for the very first time. It was a day after she was born. I was still in the ICU when the nurses pushed me on my hospital bed to the NICU. I couldn’t bear my eyes when I saw her. No mother could bear this painful realization that her baby has brain injury. As I touched her, I found myself bargaining, “O Allah, I’ll do anything for You, if You take this away from her.” I remember tears filled my eyes as I grieved when the doctor answered my question that there is no cure for brain injury. The reality hit me when I realize that the injury made my daughter lost her intellect. It was so hard for me to understand because what make us human superior is the gift of intellect Allah bestow on us. I felt distressed when I found out that she also lost her sight and hearing. The reality hit me at full force when she turned three months old, when her eyes wouldn’t follow me and she could not smile at me. At six months old, I felt devastated when she could not even move, roll, crawl or sit. Every time she didn’t hit her milestones, it brings back my grief and made my heart empty just like the heart of Prophet Musa’s mother. When the pain is too much to bear, you fell nothing anymore. All my hopes and desires for her bright future are shattered before they even begin. For more than a year my husband believed that there was nothing wrong with her and she will only get better. He convinced me that the doctor was wrong.

I learnt that this is decreed from Allah only after I understand the true meaning of Inna lillahi wa inna illaihi rajiun. "Truly! To Allah we belong and truly, to Him we shall return. I learnt that Allah, the best of all planners, tests me through my daughter’s brain injury. He tests me if I would still strive hard for His sake by being patient and staying truthful to Him. What more would you want when Allah promised to be with the patient one? He also promises us that the reward of being patient is Jannah. I understand that with this hardship He has something better for us, even if I didn’t see what it is immediately.

The hardest thing I have faced is to digest the fact that she has multiple disabilities. She cannot use her own mouth for eating and let alone for smiling. She cannot see me her own mother who bore her before she was born and cared her until this day. She cannot call me “mama” like the rest of my children call me. She cannot hear me saying “I love you” like me alwayssay to her and her siblings. She will always depend on me to provide constant love, care and support for the rest of her life as she could never take care of herself. Imagine having a baby where you have to do everything for her. Now, imagine taking care of that baby for 9 years and many more to come. La hawla wa la quwwata illaa billah. There is no might or power except with Allah. I admit it that I’m powerless and only Allah can strengthen my heart to get me through all of this.

I learnt that this trial was really a mercy from Allah, the Most Merciful, when I rediscover my purpose of life. This hardship reminds me that my only purpose in life is to worship Allah, alone. He guides me to the right path by making me staying true to Him and not giving up my faith, even in the time of great hardship. Allah guides me to be like Prophet Yaakub alahi salam, as he only complain about his grief and sorrow to Him, the All-Hearing, the All-Knower. I believe that only He can help me get through all of this.

When I saw a little girl like her, playing and running at the park, it made me sad to think that my daughter could never come to me running or hug me, let alone kiss me. I hate it when I can’t help myself from comparing her with other children at her age. What would you feel when you realize that your daughter would be bound in the wheelchair for the rest of her life? My heart hurts when I think about my fear of what my daughter can’t do but others can.

Alhamdulillah, it was a blessing from Allah that I learnt to swallow my anger and fear by allowing myself to be patient with her condition and understand that it was such a great loss only if I don’t pass the test that Allah put me through. I learnt to overlook the worldly dreams I had of my daughter. I dream of her with images of Jannah. I look forward for theday when we are reunited and she will run towards me, hug me and kiss me at thegates of Jannah. I hope I will pass the test. I hope it opens up the way for my entrance to Jannah.

Alhamdulillah, I am pleased with Allah’s decree and accept His divine intervention to have granted me a daughter with a severe brain injury. I accept her multiple disabilities and appreciate her being a person of Jannah. I understand that if I ask Allah to cure her it would mean I will take away her privilege that make her sinless and not be accountable in the Day of Judgement. By Allah’s mercy, I’m able to take the extent of her condition without pain and sadness as I realize that I am blessed with a person of Jannah under my care. I would still revisit my grief but my heart is at peace with what is coming. With Allah’s guidance, I’ve been through an unimaginable hardship by being patient and staying true to Him. I would still experience many challenges but I understand that Allah, the Most Merciful, the Wise, can only tests me according to what I can handle. Maybe you won’t understand it but you will agree that with Allah’s blessing, He has guided me through His designed process of grief. Allahu Akbar! Miraculously, it transformed my life as I rediscover my purpose of life, to worship Him alone. If this is the only way for me to return to Allah, every second and every moment of hardship I was with her is worth it.


Mamanurin said…
Allahuakhbar..sayu..menitis airmata. Moga rahmat Allah senantiasa bersama kalian..
camelia said…
Kim moga pengorbanan itu ada ganjaran yang maha besar di hari depan. Hanya Allah yang tahu . Hanta Allah yang dapat memberikan ganjaran untuk kedua ibubapa dan anak itu.
Jamila said…
As Salaam Alaikum,

Mashallah such a wonderful blog. Sister your writing and words have brought so many feelings to my heart, You really have been blessed with such a gift from Allah. You are also helping others with this blog to bring understanding and help to others to understand this disability. May Allah continue to bless your precious daughter, your children you and all your family. Ameen.
Lightnur said…
Waalaykum salam Sr Jamila

Thank you so much for reading the Lightnur and leaving kind words. I am glad this blog helps others understand disability. Please share the post sister. Ameen to the dua. Insha Allah. I will see you again.

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