Last night as I was lying in bed, I thought about Baby Ryan. That photo of him with tubes coming out from both his nostrils kept flashing in my mind. Having a tube shoved into the nose is an extremely traumatising experience, even for adults. Those images of Baby Ryan reminded of a couple of incidents when I was staying at the Kuala Lumpur General Hospital. Those three and a half months there were the most difficult period of my life, and Mum’s too, for she was with me throughout the entire time. I truly cannot imagine the ordeal of having to stay in the hospital for sixteen months.

One evening, I complained of pain on my left ribs and was given two Ponstan capsules. A short while later my stomach became bloated. That was immensely uncomfortable. I became very agitated and demanded that the tong screwed into my skull be removed because I wanted to sit up. Of course that was impossible. The tong was part of the skull traction system. It was attached to a set of iron weights hanging from the end of the frame that was my bed and was meant to stabilise and decompress the pressure exerted on my already damaged spinal cord. I was supposed to be immobilised for the duration that the tong was in place which was about seven weeks.

I kept ranting like a deranged man to Mum who could do nothing except comfort me by rubbing on my abdomen. Still I continued to rant. In the end, the nurses came and inserted a nasogastric tube into my nostril, through my throat and into the stomach. They had to do it a few times as the tube kept coming out through the mouth while they kept asking me to swallow the tube. The throat’s reflex action kept pushing the tube out. I never want to go through that agonizing violation of my nose and the gagging sensation as the tube went down my throat again, ever.

At the hospital, I got to stay in one of the four single-bedded air-conditioned rooms in the ward, one of the perks of having a father who was formerly in the civil service. It came with an attached bathroom cum toilet. That afforded us some privacy and allowed us to keep more things since home was a long way off. My view of the room was either the ceiling or the terrazzo floor. The Stryker Frame that was my bed for seven week only allowed me to be either prone or supine. If I was lying on my back and needed to be turned, another piece of frame similar to the one I was lying on would be used to sandwich me and fastened into place and then rotated sideways. After I was turned, the frame that was on my back would be removed. The floor would become my only view for the next four hours.

I saw the view of the world outside the room through Mum’s eyes. In between massaging my limbs, she would tell me about the patients, nurses, doctors and the happenings in and around the ward. One day she told me about a baby who had been there a long time. He was suffering from hydrocephalus, a condition where there is an abnormal accumulation of fluid in the brain. The constant pressure against the brain and the skull caused his head to be enlarged and most probably damaged his brain too.

Many nights, when the lights were all turned off and the ward was enveloped in a eerie silence, I could hear his piteous cries. In my mind, I tried to comfort him with lullabies and soothing coos, if only that could work. On one of her trips to the market near the hospital, Mum bought some baby clothes for him. There was nothing much we could do to help and we thought that giving him some nice comfortable clothes to wear was the least that we could do. He would not know the difference anyway.

When I had recovered enough from the surgery on my neck and was able to sit on a wheelchair, I got Mum to push me to see him. His head was unusually large from the forehead upwards. If his head was of a normal size, he would have been very cute. I was choked with emotions. There I was slowly recovering but he would never get well, never be able to leave the hospital and never be able to feel the love every baby rightfully deserves. Our eyes never met. I could not get close because of the wheelchair and he could not turn his head. If he could, I do not know if he could see. I reached out to stroke his tiny hand and he grabbed my finger. For one moment there, we truly connected. I could feel his pain, his sufferings and his hopes. I could hear his innermost primal cries - the cries of an innocent baby suffering the sins of an imperfect world. My eyes were wet. My heart was heavy. If only there was something that I could have done for you Baby, I would.

Now, once in a while, when I lie there in bed, like last night, when all is dark and quiet, I could hear Baby’s piteous cries deep within me. In my mind, I would try to comfort him again and soothe him with gentle strokes. Baby, I do not know where you are now, or whether you are still with us. I do not even know your name. I hope you do not mind being called just Baby. You will always be that cute baby who held on to my finger. I pray that wherever you are, God will send his gentlest angels to look over you. I know life was a struggle for you everyday and yet you fought to live on. When I saw you, I thought how lucky I was despite what I lost and went through. You had inspired me to treasure life with your strength. May God have mercy on you and deliver you from all sufferings.

Now we are presented with an opportunity to make a difference. However small our contributions may be, you can be sure that it will bring some relief to those who will be receiving it. Christmas is not all about feasting and buying expensive presents for our loved ones. It is about giving from the heart. For once, make a stranger happy. This is the best gift yet you can give anybody this festive season. Support Project Baby Ryan.

Baby Ryan
Photo courtesy of 5XMom / www.mylittleheroes.com

Do something meaningful this Christmas. Do something for Baby Ryan. It is not for him alone but also for his buddies at the Paediatric Intensive Care Unit (PICU) of University Malaya Medical Centre. Baby Ryan’s is a poignant tale. He suffers from congenital diaphragmatic hernia. He has been in the PICU since coming into this world on August 8, 2003. He had also undergone several major operations the first few months of his life to correct the problems associated with his illness.

Imagine a human so little suffering the rigours of chronic medical treatments. Imagine never having seen the light of day, never having felt the warmth of the sun on his cheeks and never having heard the sounds of the world outside. Imagine the only home he knows is the hospital. Imagine yourself living in a world like this and you will know what Baby Ryan is going through.

Nevertheless, this is also a tale of courage. Baby Ryan’s mummy have overcome all the torment of seeing her little one in such anguish that she has mooted the idea of getting gifts for all of Baby Ryan’s buddies in the PICU. There is nothing more self-sacrificing than to comfort others while one is in a similar predicament. Do something meaningful this Christmas. Spread some cheer to those who truly need it. Lilian is doing a great job in promoting this initiative here. I strongly urge everyone who is able to contribute in any way to make this project a success. Full information on how you can contribute is here. Baby Ryan’s story is here and here. May God richly bless you all for your generosity.

There is a good thing about meeting an online friend who is also a fellow blogger. We would already have a general idea of how each other is like from reading each other’s blog. Still, I was pleasantly surprised when I met Adriene for the first time. She was on an overnight trip here and we arranged to meet in church for Mass this morning. Since she is active in Raleigh International Kuala Lumpur, I had an impression of an outdoorsy rough and tumble girl which was only partially correct. I also had in mind a boisterous character but Adriene is soft-spoken and very courteous. She was featured in The Star yesterday.

We met Lilian after Mass. That was sort of a mini bloggers’ meet, the three of us, inside the Cathedral. I thought how wonderful it was that although we enjoy similar interest in keeping weblogs, the topics that we write about is absolutely dissimilar. Lilian blogs about her family and motherhood. Adriene promotes the Raleigh International. I write about the mundane. That is how different we are yet similar in many ways.

I am glad that Adriene had looked me up. Apart from the pleasure of meeting her in real life for the first time, we discovered that Michael, her travelling buddy for this trip, is related to Peter and me. Michael’s grandfather and our grandmother were siblings. Who would have thought that my second degree friend via Adriene would turn out to be my second cousin? Peter and I met a relative we never knew we had. This is an incredible day.

Is it difficult to love a severely paralysed man? Yes! A lot of times, I am frustrated with myself for not being able to do simple things that other people have taken granted for. Every little task needs an extra effort, sometimes a whole lot. When I finally give up tying to pick something up from the floor, after grappling with it in futility for fifteen minutes, I would sit there breathless, fuming and brood over my misfortune. It is difficult to love a severely disabled man that I am when simple tasks that even babies can do become gargantuan to my crippled hands.

Is it truly difficult to love a man with my disabilities? Ask Wuan. We have been together for five years. Not once has she complained about my lack of physical abilities. Instead, she would devise ways to make it easier for me to perform various tasks. Those that are totally beyond me, she became my hands and feet. She cared enough to observe, learn and improvise, all for my sake. She takes the impossible and makes it into “I-m-possible.” With her, I have been to more places than I possibly could. She makes my life easier. Sometimes, I have the impression that she loves me more than I myself. To her, it is as if loving a man like me is effortless. She is an exceptional person. I am sure people who know us well will wholeheartedly agree.

Today is designated the International Day of Disabled Persons by the United Nations as part of the world body’s collaborative effort in recognising the “dignity, rights and well being of persons with disabilities.” This is not only to celebrate and acknowledge disabled persons for their contribution to the global society as a whole but also the people who have made it their priority to enrich the lives of people like us in every possible way. This year’s theme “Nothing About Us Without Us” is a reminder that, although we may be “differently-abled,” we want to and are able to participate fully and equally in the determination of our place in society.