My Special Child, True Story

My Special Child, True Story

“How are you? I forgot to tell you that my daughter had died on November 10th…. “

That was the text message I received from my old friend months ago. Of course the news surprised me. We then became involved in a long chat about her daughter’s death.

“Innalillahi wa inna ilaihi rojiun……. What happened?” I replied.

“Tumor in the pontine brain stem…..we were informed that there was inflammation in her brain stem at the end of September 2013, then she was admitted to a hospital in early October. She often got headaches since Ramadan, but they were irregular at first but then after that she frequently got headaches. I had time to take her to the general practitioners and physiotherapists, but she was still dizzy,” my friend explained.

“We took her to see a neurologist who requested an MRI and blood tests. After 12 days in the hospital the doctor said that the results were positive: she had Diffuse Pontine Glioma. We’ve asked for a 2nd opinion in Singapore, Jakarta, Germany, USA and Melbourne, but the result was the same, and there were some doctors who wanted to take risks for research. Finally, we tried herbal alternatives in Kuala Lumpur, but apparently Allah, Subhanahu wa Ta’ala, planned differently. Up to now, we do not know the cause of this case and according to the doctor the disease is attacking 5 of 100 thousand children aged 9-13 years.”

“Ya Allah….these ages are still so vulnerable….we often assume that children in this age range are strong,” I responded.

“Time is so short. If you look on YouTube, there is a similar case where a child got the illness when he was 13 years old as well, but he survived, probably because his type was not diffuse. If it is a normal tumor, usually it’s a core or mass gathering and produces outer swelling (inflammation), but in my daughter’s case, the core was spread into small pieces so there was no action that could be done – not a biopsy, chemotherapy or radiation. This tumor had nothing to do with viruses/bacteria,” my friend said.

“According to the doctor quite a lot of children are in contact with the illness, but they don’t catch it because the families are probably unable to take them to the doctor,” she explained further.

Oh Allah … I was stunned. I was familiar with the grief of losing a child, as 16 years ago I also lost our first daughter when she was newly born. But my friend, I think, received a more severe test because she was given the opportunity to take care of her daughter for 13 years, was able to get to know her daughter’s nature, to take her to school, to teach her….. Experiencing that togetherness for a longer period of time would create a deeper wound.

“How did she deal with it?” I asked my friend.

My friend responded, “In the early stage when she found out that there was inflammation in her brain stem, she was so good, Subhan Allah. But right before death, perhaps because she was tired and there were prohibitions on her diet from her herbalist for not eating carbohydrates and sugar, she was somewhat grumpy and she often thought of food.”

“But at that point, she wasn’t complaining about the pain, so much and only protested concerning her eating being limited. Finally, she was not willing to accompany me if I went out. If I left for too long then she would look for me and did not want me to be far away. According to her physician, within 1 month she would be paralyzed, and her maximum life expectancy was only 8 months left,” she continued.

“Alhamdulillah, before dying, she was not paralyzed nor was she in a coma. The last week she talked a lot, but the day before she was passed, she just told me that she was sleepy and didn’t talk much. In the morning at about 2 am before she died (at 14:20) she had vomited 4 times and pooped and she only said to me, ‘I’m not going to change,’ because she’d had to change her clothes up to 3 times,” my friend recounted.

“Her condition started to decline from 11 am and her pulse, blood pressure, and oxygen saturation began to range irregular. Her pupils did not respond to stimulation and the doctor said we had to get ready. If she were to become paralyzed she would suffer longer. The day she died I had no feeling at all, but when I thought about how she became so well behaved I began thinking about how if a child has good behavior usually he or she will be taken by the Almighty faster, but I was trying to get rid of that feeling because we should be ikhtiyar and always seeking healing,” she said. 

In the end my friend revealed, “The medical tools had already been prepared for her since the morning because the illness had attacked her respiratory system. Previous symptoms were difficulty swallowing, sometimes nausea, and stiff fingers….but I’m sure that this was the best thing for her and the family. Allah knows what is the best for us and Alhamdulillah, since the diagnosis, we were given time to accept it willingly. Inshaa Allah we will all be strong, patient, and sincere……..”


That was our long chat in last November and when I met with her in Indonesia a few days ago I was so happy to see that she is now pregnant. Oh Allah, I hope this unborn child is able to treat their wounds that have formed from the loss of their special daughter. You have a wonderful plan for Your people, we understand that not all that is good for us is good according to You, and that not all things that are bad for us is bad in front of You. Only with sincerity and patience do you so easily You answer our prayers.

by A.a. Sumadri  My Special Child, True Story 561766 447276115354615 1615190195 n

by A.a. Sumadri

Delina Partadiredja

The author has been writing since elementary school. Prior to be the in-charge person for contents she often contributed to an Islamic website. Further, she has co-authored two books and one book of poetry. Her previous banking career followed her completing Bachelor of Economics. She obtained an MBA from Leicester University in the UK. She currently lives in Jeddah, Saudi Arabia.

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