A LITTLE PIECE OF MYSELF POST GHAZIY'S TOOK HIS STEPS FROM THIS WORLD

I was pregnant, we were very excited and looking forward to meeting this new person. The next 9 months went as smooth as could be with no complications, other than mild heartburn on my part. On December 12, 2010 Muhammad Ghaziy arrived into the world and our hearts.

From the very first he was so sweet, easy going, and peaceful. Everyone commented on how calm and beautiful he was and we all noticed how he had a cute chin. That December was the warmest on record and Ghaziy and I enjoyed every minute by going through our confinement period looking at the sunshine or look at the leaves from the sliding door of my sis in law home.

I went through a great and precious moment nursing and caring for Ghaziy. There were a lot of chemistry shared between us..more than I could ever imagine. resuming my work life made me misses the little guy more. I juggle a tight schedule of appointments and to be home as early as I could afford as the nanny would said, "Haaa.. Ghaziy looks happier and more cheerful once he listened to ibu and ayah's gave Salam". that's a miracle shown by Ghaziy. Merely calling his name during his nap will caused him to wake up and granting you a sincere smile. People will earn his delightful smile whenever they greet him with Salam. Nevertheles, a child could never be a child if he has no tantrum. Ghaziy loves to ride in a car or even his stroller. However, his problem was, he ain't favor the vehicle to slow down or worst, stop. Not even stopping for a red light. The moment the car continues to move, he would turn back to his calm face and indulge the scene from his window.

My hubby and I regularly has anxiety towards our son's light transmitted sound as if he's having flu. I would always refer the issue to pediatrician however they said it was normal and will go away on its own. The sound will disappear if he's sound asleep but never stop when he's awake. So, we used the salt water to clean his nose but the problem never solved. We continue praying that it will go away. Another anxiety was Ghaziy's movement. There was no movement on his lower body and he could only afford to move his hand slightly. I tried not to have the idea of him turning to be a person with deficiency. I was trying very hard not to be emotional when my parent and siblings speak up their anxiousness on my baby's development. Until I told my husband that I don't give a care to what people will say, Ghaziy is my child regardless that he abnormal, regardless he couldn't walk or move. I cried at my husband's shoulder and we end up the next day at our pediatrician which he finally referred us to Pediatric neurologists. Wee made appointments on 28th of April 2011 and we were scheduled to meet the specialists by 31st May 2011.However, on May, 1st it all changed as Ghaziy turned blue at my sis in law's house in Keramat. We were rushed to the nearest family clinic where he was assisted with oxygen until the ambulance took us to the emergency unit of Hospital Kuala Lumpur.

Over the course of the next 4 hours we watched helplessly as Ghaziy endured countless trials of finding his vein to insert medication line, and his last feeding was 8 hours ago which he barely had about an once of his milk. Finally the on-call doctor stopped her attempt and allow him to be fed but through a tube. He was asleep until 4 in the morning his heart rate went high and oxygen reading shows a dissatisfying number. Hence, he took a trip to the ICU. At that moment I lost words, I don't even know how to react. My world became blurry. The only thing I remembered doing was praying hard. We also prayed more than we had in our entire lives that this was just a horrible mistake and went through more Kleenex than you can imagine. You need to understand that hubby and I had no clue that anything was wrong, Ghaziy was responding, he could coo, he could smile, and his face, particularly his eyes, was always expressive. Then on May 3rd, the bottom of our world fell out. Our neurologist, told us that Ghaziy had SMA or Spinal Muscular Atrophy Type 1.

Hubby and I were devastated by the news, as you can imagine. Here we were one minute thinking our lives were perfect, only to be told that our sons life could be measured in days, but definitely would be only a few months. All our dreams, hopes, and wishes for this wonderful person were crushed in an instant. Everyday now became a priority of helping him have quality of life for the time he had left and trying to enjoy every minute that we were blessed with his presence.

We were fortunate to be able to care for him daily even though I wasn't allow to spend my nights with him. I started to get familiarized with machines to help him feed, suction machines, a machine to help us feed him when the time came, machines that monitored his oxygen levels, and then finally a biPap which became his best friend forever for the rest of his life. The time in the hospital had weakened Ghaziy, but caring for him was not much different at first. We were fortunate in that we could hold him, teasing him, play peek-a-boo, watching movies, play iPad games, and we could just spend time together. As he would get distressed, and get very sweaty from working so hard to breath, we knew that he was weakening. Fortunately, I was still able to take afternoon nap and lay my head next to him . I loved falling asleep looking at that sweet face smiling at me with those soulful eyes and I hope that he loved it too.

Eventually, the only times we got to hold Ghaziy was when doctors finished their rounds just to avoid any false alarm that he might be in distressed and after maghrib prayer; believe me we savored those few moments. Then in early July, 2011, as we celebrated his 7-month birthday, he got to smile more and to coo a lil bit louder. I truly misses his smiles. A single smile from him feels like a dime and it'll bring peace of mind whenever looking at him.

When we eventually lost Ghaziy he was unlike other SMA patients I used to read where they reached the point that they could not be on the respirator and balance his oxygen levels, and yet could not be off it without getting into distress. He was playing with us that beautiful morning when he suddenly stare down looking tired and he just fall asleep. He left us with his signature smile that we would never be able to forget and we could never share in words with public. We were blessed that we got the chance to hold Ghaziy and tell him how much we loved him as he passed from our lives on November, 15 2011.

Most parents with infants worry about waking up at 3 a.m. and having to settle or feed a crying baby. Hubby and I worried about waking up to phone calls and having to learn that it's nothing but a miscall from strangers. There were several times when both of us thought that we would not be able to, but this tough, brave boy would fight for just one more day. It is hard to describe the constant panic that you feel every moment of everyday. It is heart wrenching to watch your child go through such a horrible de-progression and watch this bright mind have to be trapped in an uncooperative body. Hubby and I had many moments where we thought of all that we would miss with Ghaziy, but mostly what he would miss out on. Simple things like walking, eating solid food, riding a bike, fly-fishing, going to school, feeling the ocean on his feet, falling in love and having children, even just being able to laugh. But then this wonderful, beautiful, bright boy would look at us with the greatest, most loving eyes we have ever seen and we would think of everything he could do. Like making us slow down and enjoy the simple, quiet moments. He made us appreciate the beauty around us, within us, and in others. Most of all he could brighten a room with just one look, or one smile. I honestly know very few people who can do that.

Ghaziy truly was the most courageous, peaceful, sweet person that we have ever had the pleasure of knowing. He really did teach all of us to take each day as it comes, to be patient, not to take anything or anyone for granted, and finally to realize that it is not the amount of breaths you take, but truly the moments that take your breath away that matter. We are better people for having known him, we are so honored and blessed to have been his parents, and we will miss him everyday. We know that he is in a better place and he is free from the chains that trapped him in this life, and for that we are thankful.

We miss you our brave boy and we love you, now and forever~

Ayah & Ibu