There is a sense of calmness and serenity as I enter Kevin’s bedroom. His toys are on the floor, scattered, yet well arranged. On the side of his bed leans a big cardboard collage of all his photos, like a mural painting depicting his life story. Lights are off; but flashes of red lights and casts of shadow come from a globe lamp gleam on the wall and the ceiling. Atop the dresser, there is a stoneware urn with two angel figures above the lid. Two photos of Kevin on a frame stand alongside.  His face is bright, and his upper teeth protrude as he smiles. Small candles are lit and the scent of rose petals sprinkled on a glass plate fills the air as I move closer in to the dresser. Inside Kevin’s room is a shrine; and here, in that square tiny box, lie Kevin’s remains.

It was not long ago that Kevin used to stay most of the times in his bedroom, playing with his toy guitar or with squeaky balls or watching his favourite TV program. He would get really excited whenever he watched the Wiggles or the Thumb Wrestling Federation. He would sit right in front of the screen, his body bent forward. His hands were shaking, his eyes frozen on the screen. He was happy and at ease.

There were times when his younger sister, Kathleen, tried to annoy him by changing the channel to another TV program. “Kevin, I’m changing the channel,” she said. “Don’t change it… he’ll get angry at you,” Kevin’s dad, Clem, said. “Nah…he’ll be ok. He likes what I’m watching,” she said.

Kevin gave her a greasy look; his eyes widen, and he yelled “ah…. ah…” It would seem that he was not happy at all. Kathleen soon changed it back to the Wiggles, and Kevin looked back on the screen, swaying his body.

There were other times when his older sister, Kathy, came home from work. She walked past Kevin in his room and forgotten to say hello. Kevin would yell “ah…” and would always have a ‘puppy dog’ look, trying for his sister’s attention. Kathy went in to his room and gave him lots of hugs and kisses. She said “Ohhhh… sorry Kit Kit,” her name for Kevin.

Kevin loved attention. He would pick and choose who he liked and disliked. “If he does not like you, he won’t look at you. He’d yell, close his eyes or push you away. But if he likes you, he’ll try to grab your attention. He’d be lying down and want you to give him a hug,” Kathy explained, while she grinned.

Kevin’s brain did not fully develop as he was born six and a half months premature. Kevin Marzon Salem was born on the 6^th of January 1992 and only weighed 1.4 kilograms. He was so small at birth that he would squarely fit in to Clem’s palm. He was cute, yet dark and hairy. He was in the intensive care unit (ICU) for three months and as the months went by, the family noticed that Kevin was different from other babies in terms of his growth and development. For instance, his lips would turn to blue—he had difficulty inhaling air into his lungs.

Eight months after his birth, Dr Dinah Reddihough, a Child Development Specialist at the Royal Children’s Hospital, diagnosed Kevin with cerebral palsy (CP). It was devastating news for the family. Clem often wondered why. But he had stayed strong for his wife, Cora.

“We were in shock to hear that Kevin had a cerebral palsy. We didn’t know what CP was. They explained to us that CP was a very complex disease and it has something to do with his brain that affects his movement,” Clem said.

The doctors noted that there was no medical history of CP in Clem and Cora’s family. “They only told us that he was a premature baby and that he may be one in a million kids who had this disease. This was all they told us. They did not tell us what would have caused Kevin’s premature birth,” he added, his eyes were red, his chest filled with sadness.

Further diagnosis of Kevin’s CP from other doctors pointed to the fact that his disease was caused by lack of oxygen during birth. It was also revealed that Cora’s fatigue and the fetus’ low position in her womb may have contributed to his early delivery. Kevin was also diagnosed with epilepsy and asthma, and he would have seizures from time to time especially when he was sick.

Clem and Cora were stressed, disappointed, and angry. As newly arrived migrants from the Philippines, they were confused and unsettled on Kevin’s medical condition. They decided they had to continue with their lives.

Kevin became part of their daily chores. They fed him, mostly with cereals; they bathed him and dressed him; they put him to bed at night and got him out of bed in the morning for school.

When Kevin was five years old, he started going to Uncle Bob’s Child Development Centre at Parkville. At Uncle Bob’s, Clem and Cora learnt from other families’ experiences. This gave Clem and Cora the insight on how to care for special kids like Kevin. Kevin learnt how to focus his attention with particular objects, mainly with toys, and learnt to interact socially with other kids with disabilities.

Kevin’s intellectual and physical development was slower than ordinary children. His bodily movement was severely affected. He would be on his wheelchair or sitting on the carpet most of the time. He also had speech difficulties. He would be saying “da, da, da, da…” or fake laughing “he… he” when he was excited or he would yell “ah…. ah” when he was angry. Furthermore, he had eating and drinking difficulties because certain muscles around his mouth and tongue areas were affected by his CP. He mainly ate cereals or foods that were easy to swallow such as rice with soup.

But Kevin had no difficulties with his hearing, touching and eyesight. He would complain when he heard Lady Gaga music and did not like girls either as they laugh a lot. He responded immediately whenever he heard his favorite music and TV shows. “He liked Thumb Wrestling Federation at Cartoon Network. Whenever he heard this show, although he was asleep, he’d get up quickly and watch it. His eyes would be fixed on the screen. He won’t move and he’d be a ‘snob’,” Cora said, there was lightness on her face.

Kevin’s sense of touch and perception were equally admirable. He liked dipping his body into the water, touching the grass, and stroking someone’s hair. At the shopping centre, he would stretch his arms and feel the fabric while his wheelchair glided across the clothing stand. When he was near the door, he would hold on to the doorknob and bang his head softly on the edge of the doorway. But most of all, he loved seeing his dad and he would get really excited; his hands would wave, his mouth wide open, his body swaying back and forth.

Three years ago, Kevin’s mental and physical development had improved enormously. He matured and gained weight from a little boy of nineteen kilograms to a young man at forty one and a half kilograms. He responded quickly when someone called his name. He made a lot of eye contact and communicated well by exerting verbal sounds. “Kevin can maintain his balance and upright sitting whilst sitting on a half moon bolster for greater than 3 minutes with close supervision… When highly motivated, Kevin will reach across his midline to explore objects,” wrote his teacher, Chris Hurst, in Kevin’s 2009 end of year school report at Glenroy Special School.

But, in late November 2009, Kevin’s day-to-day behaviour started to change. Most of the times, he would just be on the mattress, slumped. He did not move at all. Clem and Cora thought it was only his epilepsy, and that perhaps, it was because he was growing up and gained more weight in recent years. Kevin started to get numerous fits and would randomly vomit. His snoring was heavy at night and was very timid during day time.

On the 3^rd of December, Clem and Cora drove Kevin to the Royal Children’s Hospital where he stayed for twenty four hours before he was transferred to the Northern Hospital in Epping. He was diagnosed with pneumonia, a recurring disease that he had had since he was five years old. Kevin’s pneumonia kept coming back whenever he had major operations. He had two operations, where he had pneumonia: one, putting a brace on his hips when he was eight years old; and second, removing the brace from his hips when he was nine. He struggled and managed to survive. But, Kevin’s recent pneumonia was worse than the two previous occasions, as his immune system could not fight off a deadly virus strain known as pseudomonas—a bacteria that attacks those who are already sick or who have weakened immune system.

Kevin was in the ICU in Northern Hospital for three days and was showing some improvements. He would open his eyes and watch the Wiggles, and his breathing was less heavy than before. He was transported back to the Royal Children’s Hospital’s ward for recovery. Shortly afterwards, Kevin was moved back to the Children’s Hospital’s ICU because of increased secretions in his lungs. The doctors put Kevin on a Bipap—a breathing-aid machine that would help improve his breathing.

Kevin and the rest of the family were at the ICU for five weeks, still hopeful of his recovery. But they were exhausted. Kevin was such a fighter. In the first two weeks, his lungs would continually collapse, but he would resist and manage to recover every time. Anger and frustration endured, as the family was still undecided on Kevin’s worsening condition. “They [doctors] said that Kevin was not doing well, and they wanted to make him as comfortable as possible; and that only meant one thing—that he was not going to make it,” Kathy said, her hands moved sideways as she explained.

On 6^th day of January 2010, Kevin celebrated his 18^th birthday at the ICU. His family and relatives gathered around him, each wore a birthday hat, and sang a birthday song for him. Around Kevin’s bed were bunches of flowers, balloons, stuffed toys and birthday cards. His body was reclined sideways on a bed, his eyes closed, panting heavily. He had an intubation inserted in his lungs as the Bipap no longer aided his breathing. Still, there was no sign of Kevin’s improvement. He was in so much pain that tears slid off Kevin’s eyes and disappeared into the weave of his white quilt.

After some reflections and long discussions with relatives and the medical staff, the family decided to let Kevin go. He died at 3.20 in the afternoon on the 8^th of January 2010; his family, Clem, Cora, Kathy and Kathleen, were with him on his bedside.

“Our family is what it is because of Kuya. I could not imagine how it would be like if it wasn’t for him. I have learnt so many things about him,” Kathleen said, calling him ‘Kuya’, her big brother, in Tagalog language.

Cora comes from work. She goes straight to Kevin’s room, lies down on his mattress and cuddles his stuffed toys. Clem switches-on the TV and watches the Wiggles. In the study room, Kathy and Kathleen laugh, reminiscing about Kevin. “Ha…ha, yes, he is so cheeky and fat,” they tease.

Kevin is now at home; there in his little shrine, in his family’s hearts and memories.