On this day, 12 years ago, my youngest arrived at a very low birth weight of 1.25kg on the 28th week of pregnancy. He arrived 10-12 weeks too early.  I went into premature labor quite suddenly, in fact within 12 hours after the usual gynae check up and one in which she said that all was fine. The contractions came, I started to bleed (later I learnt that I suffered from placenta abruption) and he was delivered by emergency c-section early that morning.  He did not cry (like my other children did when they arrived) and I wondered if he survived.  

The days that followed was a complete blur and for years after I kept asking WHY this happened and many times I blamed myself for not taking care of myself better. I berated myself for making that short trip to Kuala Lumpur 2 weeks before and for running around to manage work, my two other kids as my husband travelled for work very often. I blamed myself for doing too much and not pausing to rest when that was a sensible thing to do.

He had suffered intracranial bleeding on the left side of his brain and it was a grade 3 out of a grade 4 bleed -- 4 being the worst.  The bleed prevented the smooth flow of cerebrospinal fluid (CSF) and thereby caused hydrocephalus.  The first operation he underwent was for the installation of a reservoir shunt (link to a few images) on the top left side of his head so the doctors can inject out excess CSF daily.   This had limited impact and the next operation 1.5/2 weeks later was a far major one. The surgery team removed the reservoir and cut through another part of the head (this time the bottom right side) to permanently insert a VP shunt. The shunt was to help with the daily drainage of CSF to prevent fluid build up and cause pressure to the brains. He is still living with the shunt till today. As a baby’s skull was soft then, the excess fluid which drained with the insertion of the shunt caused the front part of his skull to ‘collapse’. He lived for the next 16 months with a slightly triangular head shape.

I can no longer recall exactly what I felt in the 101 days we spent at the neo-natal ICU. I can only remember an overwhelming sense of numb. I am an introvert and I can do things alone for weeks on end nor talk or see anyone.   But in those times, the sense of isolation was incredible.   It was so, so hard to openly talk about this and to even ask for support. For years, I lived by the mantra 'one day at a time' and 'to do all which is humanly possible' to help him survive and give him a shot at living a normal life as best possible. No one could tell us how the bleed will impact him as he grows up. (This photo was taken on 2 Sep 2008, discharge day from the NICU)

He underwent another major surgery at 18 months to correct the shape of his skull. It was a procedure called the Fronto Orbital Advancement (FOA). It was a pre-emptive strike to ensure his brains had sufficient space to grow and not impede his future development. The neurosurgeon had to cut through the front top quarter of his skull, the plastic surgeon reshaped it to make it more regular, then screw that part back and use surgical staples to bring skin back up for healing.   Other stays at the hospital included the time he had virus infections, a chest infection, febrile seizures.   Recovery took time, he was put on long term medication, needed much attention and these episodes made it difficult for me to hold a full time job and also manage the 2 older children of ours.

We spent the first 8 years of his life in what I would term as deep therapy. The doctors / therapists said we needed to ensure that his global development delay was arrested as soon as possible.   We saw many therapists to get him up to speed with motor skills, sense of balance, ability to visualize depth, ability to use the right side of his body (the bleed was on the left side so it had some impact on the right side of his body), help him walk better, get the muscles stronger, help with focus, help with handwriting, ensure he can talk, read etc etc.

The impact ?  We were spent, we were exhausted … emotionally, psychologically, physically, mentally, spiritually and in many other ways.  I withdrew into myself even more and only spoke to few people I was comfortable with and to a few clients, who later became my friends and formed my inner circle of influence.  

I was very fortunate that the global CEO of the company I worked for then, suggested part time work when I submitted my resignation.  So I started on a 1 day work week, managed a handful of accounts and slowly worked back up to 5 days, with 3 days from home.  Work kept my sanity, shifted my focus from the situation we had at home. It made me feel that I was in touch with other people and had a chance of feeling like I accomplished something in another part of my life, when I closed deals and got various training initiatives delivered successfully.

So today, on his 12th birthday, I want to #celebrate life.  I want to #celebrate us making this incredible journey as a family. I want to #celebrate the fact that I have stopped asking WHY and #celebrate the fact that we are here in our #NOW and we #appreciate this moment and space we are in. Finally, I am at #ease and I am at #peace.

I appreciate you stopping by and reading this article up till this point.  Before I end, I want to share some #lessonsinlife as we bring up our differently abled child :

1)     I learnt the meaning of having #faith and #submitting to the will of the Almighty. There was absolutely no one, nothing I could rely on when he went through those high risk surgeries. But in those times, hard as it was, I was focussed on being in complete submission to the flow of life and prevent fear from clouding my spirit. I submitted to an incredible Divine power which gently supported us and aided his quick recovery.

2)     I learnt to #surrender to this Divine force and when I felt I could do no more, I surrendered some more and that slowly took me out of asking the billionth 'WHY this has happened' question in my head. This helped me to shift my focus on appreciating the miracle I see daily as he grew from strength to strength.

3)     I learnt to share my experiences as it helped to soothe my soul.  Initially, I refused when the doctors at the hospital asked if I would share my experience with other ICU parents.   Later, I accepted when friends approached me to talk to their friends/relatives who are undergoing similar experiences. I became a 'counsellor' without intending it at the start and this brought me incredible #comfort and #solace. I hope to continue to provide these voluntary support work in the future.

4)     I learnt that the #humanspirit is indomitable. Even a helpless baby was given #strength by the Almighty to undergo the experiences he was presented with. He continued to fight, against the incredible pain of medical procedures and later the fear he had of ambulances, hospital stays etc    

5)     Finally, I understand #gratitude and #joy in far deeper dimensions now.  When he could walk at around 3 years of age, with a reasonable sense of balance, I felt a sense of #happiness and #accomplishment I never felt before.      

We have some way to go as we support our son to unlock his #potential, go through this rigorous education system in Singapore so he can live his best life.   We will do so as long as the breath of life remains in our bodies, and we continue to support our other 2 children too.  

#Unconditionallove, doing our sincere best, as my late grandma had taught me, is the answer to every life’s situation we may face. This is the story of my #heartrevolution and may it give #strength and #hope to anyone who may be fighting their own #battles.

Rainbow over the Swan River, Perth. One of Omar's favourite holiday destinations. Rainbows remind me of beauty after the rain. We saw many rainbows that day and it will be a day our family will always remember. (Perth, WA, June 2018)