When he was 2 months old, he was diagnosed with Venticular Septal Defects (VSD), in simple term means, he had a hole in his heart. As he grew by the months..his hole was getting bigger, we were advised to go for surgery to patch up the hole. He was barely 10 months old going for the surgery. I remembered, me and my wife, we were so young 25 & 23..still in shocking stage..the operation at IJN lasted for almost 3 hours. I could still recalled how I cried hysterically at the first sight I saw him at the ICU room, his tiny boney body was wired all over. Normally in any VSD closure operation, the patient would be in ICU for three days before the patient is being transferred to a normal ward. But Faris did not stablize, he was in coma, for two long weeks..we felt like forever. We are being tormented each time the doctors scrambled to revive him..we could not take it the dreadful feeling of losing him....we just can't live with that..we can't let him go. At the same time..the company that I worked winded up..I had no job..but we never cared..all our thoughts were all focused on Faris.
Before the operation, my mom advised me to pray a lot..but I never really took her advise seriously..and being the so called modern thinking..I put my trust on the doctors, whom I thought could do wonders. Until one day, I just do not know why, based on my gut feeling, I requested Faris to be transferred from the adult ICU once the paedratric ICU has a vacant spot. As I was looking at Faris from a far, the doctors did a routine check up..I could still recalled the exact words blurted out for one of the doctors..she said " budak ni takda harapan, this boy is hopeless, he has no chance". What she did not realize I was there and could heard what she said..I still curse that doctor till this very day. So much for putting trust on the doctors. At the same time, I realized, the only one I should seek help is from Allah..I felt so ashamed..so helpless..I begged for Faris to be saved. That was the time I really really pray my heart and soul out..tears were flowing each time..wanting..begging..praying...for Faris to survive this ordeal. Strangely, at the same time..I felt so calm..started to feel compose..settled down. Somehow there was a feeling that things will turned out just fine.
On the day, my wife's grandma ( Tok wan) visited my son at IJN, that was the first time Faris finally opened his eyes..woke up from his two weeks in coma. Since then, his condition improved tremendously..he became stable and after a few days, he was transferred to the normal ward. After almost a month, my wife, who had sacrificed so much finally get to sleep besides him. This is a blessing in disguise..I have realized now..of course, being a weak forgetful human as I am..I need to be reminded all the time, I guess that is why we are always being 'tested' so that we will not go astray along the way.
The doctors who treated Faris marvelled at his turning point of recovery. After three years of follow ups at IJN, the hospital declared that no further follow up was required, he has fully recovered.
Little that we know, Faris has something else waiting to surprise us yet again. At three years old and going to be four, we started to worry, why he tends to play by himself and do not mixed with other children at his nursery school..why he has not spoken a single word..not even "mama". We took him to HUKM for check up, then the second blow came to us..he was diagnosed for Autism and ADHD.
Autism by definition is a term that refers to a collection of developmental disorders that affect the brain. This brain disorder affects a person's ability to communicate, form relationship with others, and respond appropriately to the external world.
ADHD or Attention Deficit Hyperactivity is a disorder of childhood and adolescence characterized by lack of impulse control, inability to concentrate, and hyperactivity.
Since then, he has been doing routine theraphy, an early theraphy intervention the doctors called it, in order to help him to cope and adjust to the best of his ability comparing to a normal kid. At that point of time, we started to become worried for his future since we know now that there is no cure for Autistic child and this is a life impairment. The theraphy includes from speech, music, computer, behaviour etc. These kind of theraphies have different approach and different name such as Applied Behaviour Analysis (ABA)and Picture Exchange Communications System (PECS). All this therapies and special school he attended is by far not cheap..it is very expensive. Not many choices of special school available and the structure of these special school in general are not well organized. The public schools in our country is not uptodate with the development of special children needs, that is why many parents who could afford would go for private schools which are better structured ( although not even to international standards). For other parents, they had no choice but to stick with the public schools. The problem with public schools, that there are short of teachers in special education..moreover the students from all different kinds of diagnosed from dexlesia, ADHD, down syndrome, slow learners and autistic are included in one class. Whereas my opinion, these children should be educated on one to one session.
Faris's diagnosed also changed our life completely. We as parents felt guilty of what he is going through, what will become his future..we also felt that how will our families, friends and people will look at us and treat us..in short we felt isolated, depressed and outcast by the society. Our emotions become quite unstable from being very sensitive, depressed and protactive. The accepatance of our Malaysian society on Autistic children is still very low ( such a dissapointment) I hate them..sometimes whenever these so called 'perfect people' looked at us, as if we came from a different planet, or think that autism is contagious, we felt so hurt,sad and so depressed. I sometimes wished that they would have children or relatives like we do, and so that they will ONLY understand and be more understanding towards autistic chilren and parents like us. Life has become such a struggle for us in accepting the fact that this is a reality and we need to face it, accept it and improve it.
But this take us many years to finally adjust to this condition. Many phases we need to go through..many many challeges we have to overcome. In the year 2006, he stared to get epilepsy or seizure each time he was having fever..this took another toll in our life, i remembered driving frantically rushing home each time when he has seizure. His seizure attacks became worse and worse each time until it happened even when he is well. One strong seizure occured in year 2007, and the doctor diagnosed this as status epilepticus. Afterthat Faris had to go through many many test from EEG, MRI and etc. The hospital was like our 2nd home.
As we carry on with our life, each day trying to make the best of what we can. Though I feel, there should be more efforts I wished I could contribute, more time I wished I could spent with him, but I guess statisfying myself could never happen. Deep in my heart, I still fear for his future..can he become independent in his adulthood? will he has friends and other family relatives that are willing to take care of him and support him?. Although I can't have the assurance on his future, but I have faith..I am sure, Faris will always has his footings..Allah will look after him, his 'rezeki' and well being InsyaAllah will be taken care of.
Today, Faris has made tremendous achievements. He is now 10. He is now able to uttered a few words although it is not clearly most of the time, but to us each time he has a new vocabulary, it is a celebration for us. His behaviour has improved remarkably, I would say his ADHD has minimized.
He smiles a lot. He laughs a lot too. He is always cheerful and in chirpy mood. At first glimpse, many would have thought he is just a normal 10 years old boy. But nobody knew that this boy has gone through many many episodes in his life...and he does not understand that life is not very kind in our world..as he grew older and become adult, there will be more, far more difficult challeges he has to face, and at that time he has to face it alone. Yes, we accept that he is not normal, because he is more than an average child, he is an extraordinaire. I am so proud and thankful of his accomplishment. He is my son..and I am a proud father.
