Alhamdulillah, praise to Allah S.W.T. the Almighty, for giving me the time and chance to write about something so dear to me. It took me a while to gather the courage to finally put this in words. It is the story about my precious son, Muhammad Irfan. I have kept this story to myself and family previously, but now is the right time to tell.
Telling this story feels like revisiting an old wound, painful and something that I would like to avoid. But I know this is the reality and being brave means being able to tell it without hesitancy. Truthfully, I don’t know where to start. In fact, while I’m writing this, I was afraid. Afraid to be labeled as someone who is looking for sympathy. Was it the right thing to do? In all honesty, all I want was to share my experience, especially to those parents who are in the same boat as us.
This is a story about Muhammad Irfan.
October 13th2012, was a date I could never forget. It was the day he was born. It is true, what they say about labor; the long hours of agonizing pain, the anxiety, it felt like you’re fighting a battle, only today, I’m bringing another life into this world. God is great, the all knowing.
The moment when he was put on my chest, I was overwhelmed with this undefined feeling. His eyes were searching for mine, and when they met, I knew I had fallen in love with him. Alhamdulillah.
A short while after that magical moment, he was taken by the doctor for assessment. My battle, however, wasn’t over yet. I was bleeding profusely after the delivery and they had to take extra measures to stabilize me. The pain was unbearable. Despite being in the labor room for more than 10 hours, in my mind, I only think about my beautiful boy. Suddenly there’s this unsettling feeling inside of me. My maternal instinct was trying to tell me something.
After my condition had stabilized and transferred to the ward, I requested to hold my beautiful baby. I want to shower him with kisses and hug him with all my might but things were delayed. My mind started racing with doubts, thinking all the possible things that might happened to him. Worries overcoming me.
Awhile after, he was brought to me by the doctor. I was trying to keep calm and push out all the negativity filling my head. The doctor looked at me with her sad eyes, and placed my beautiful boy next to me. The subsequent words coming out from her mouth broke me. “Darleen, I hope you could be calm and strong with what I‘m going to tell you. We did few tests on your child and we found that his head circumference is smaller than the normal baby. We expect there is an abnormality in his brain.”
I looked deep into her eyes, trying to hold my tears, trying to digest the information, trying hard not to scream. But at that moment, being strong is not possible.
“I’m really sorry for saying this, but we expect the child to live between 2 weeks to 2 months because of the abnormality.” I felt my world collapsed. Tears gushed out like a bursting dam, all I could do was kissed and hugged my baby, told him that I love him dearly.
The doctor hugged me and excused herself after that. My husband and my parents were astounded, speechless. My husband, Fandy, hugged me and whispered words of encouragement, asking me to be strong and reassured that he’ll be there with me at every step of the way. Mama hugged me next. I know deep down she wished to turn back the time, when I’m just a small fetus, in her womb, hoping that I don’t have to go through all this. I couldn’t stop crying. My dad came near us, and said something that became my strength until this day. “Brace yourself, even when it’s hard, because God has made it this way. Your beautiful baby will wait for you in the heaven. That’s His promised.”
Subhanallah! (The Glorified is Allah)
On the 7th day of his life, my beautiful boy, Irfan, was scheduled for an MRI. My heart screamed, looking at that small fragile body going into the big noisy machine. I couldn’t stop myself from crying. Every step seemed so painful. I could only pray to Allah, for Him to replace my baby’s brain with mine. And if it is His plan to take this beautiful life from me, I am ready. Repeatedly I prayed and prayed for the best.
Allahuakbar, God is the All mighty!
If there is a lowest point of my life, this would be it. I wasn’t completely healed from my Bell’s Palsy, diagnosed few months back. I was jobless at that time, worried sick about Irfan’s condition, and to make things worse, I lost my friends (some, not all), when I needed them the most.
We constantly have countless doubts in our minds. Question of what, why, how, kept playing, with no exact answers, made us more scared than we already were. We received a lot of opinions, perceptions from people around us. Scientifically, Irfan’s brain development was interrupted because of the Dengue Fever I had in my first trimester. That’s the crucial time for baby’s vital organs to develop, especially the brain. Even the smallest slightest error could affect his development.
Alhamdulliah, all praises are for Allah.
Now Irfan is nearing 1 year of age. “Kun faya kun”; Be! And it is! If Allah has made it that way, it will be that way. Irfan is still with us. He can’t sit or crawl or walk or respond like a normal baby in his age, but he is still with us. I am thankful and grateful for that.
We begin to relive our lives. I have a job now and my husband is finishing his studies. Irfan’s treatment, physiotherapy and stimulatherapy do costs us quite a lot, but we will try to give our best for him. As long as we are able and strong, we will work things out for him, for us. Supports from family and closed friends are endless. I admit that sometimes I feel like I’m the luckiest person alive for having this positive people around me during the good times and bad. I know who’s real and who’s not.
One thing for sure, we keep on believing and hold on to the fact that, this beautiful boy, will wait for us in the heaven, as Allah had promised. And our role as his parents is to love and cherish him for as long as he lives. Insyaallah. Our love for him is eternal. Today, his smiles and laughter helps washes off our fears, worries and tiredness.
This sweet beautiful boy of mine is diagnosed with
Congenital Brain Anomaly and Global Developmental Delay (GDD).
Congenital Brain Anomaly and Global Developmental Delay (GDD).
Muhammad Irfan, he’s the love of our lives.