Assalammualaikum w.b.t.
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).
Muhammad
Irfan, he’s the love of our lives.