Adam - The Labyrinth of Life, and Leukemia.
The Beginning.
1.
“And I learned what is obvious to a child. That life is simply a collection of little lives, each lived one day at a time. That each day should be spent finding beauty in flowers and poetry and talking to animals.” – Nicholas Sparks
Adam James Sheen. Three words that ring like bells, and sting like paper cuts, in the ears and hearts of the people who knew him.
He was an impossible miracle. But then, really not a miracle at all.
His life left not but a dent in the world, but that dent was big enough to inspire the uninspired, and make a tiny part of the universe just that little bit brighter.
For a time.
2.
Life before disease was good for the Sheens. Danielle and Greg were happy. They were well off. Their kids, though young, were good, quiet, respectful, fun, and healthy.
Adam was a cheerful kid; I don’t remember a time there wasn’t a smile on his face. His big brown eyes could light up a room, and he had a smile that could never be tarnished. He was smart. So smart for a five-year-old, and always a loving brother to his little sister, Melanie, who had always maintained a less-than-cheery disposition. Even before it happened.
This was February 2005, and in only a few, short months, Danielle would wake up to find her son covered in purple bruises. The first sign that something wasn’t right.
As she sat in the waiting room at Westmead Children’s Hospital, she didn’t fear the worst, but the worst was what she got.
“Acute Lymphocytic Leukemia.” Three insufferable words.
The only sounds that came out of her mouth were questions. “How? Why? What can we do? Is he going to die? How can this happen?” Fear made her voice tremble, as silent tears drenched her pale skin.
Adam gripped his companion, Dudley - a small stuffed dog he never left the house without - and took his mothers hand. “Am I sick?” The calmness in his voice almost agitated her. “Yes, Adam, sweetie. But, we’re going to make you better.” She looked at the doctor as she spoke; her eyes glistened with a force that can only come from the gaze of a mother who would do anything to protect her children. She wasn’t going to lose her little boy. Not now, not ever.
3.
Five years later, and we hit the New Year. January 2010. It was almost like the beginning of the end; the final stretch of a labyrinth that no one wanted to see the end of. Adam was 9, and the doctors weren’t quite sure whether he would make it to his tenth birthday. September seemed decades away.
“I want lego. I just want lego. See here, I’ve marked off all the pages of the book with a pen to show you what kind of lego I want.”
He was thinking about his birthday already, and we’d just had Christmas.
Sometimes it was hard to tell whether he realised that his life had a fast approaching expiry date. There were days like today, when he’d say things that led us all to believe he knew, but he wasn’t worried. He was never scared. He was admirable, and firm. Not afraid of what he knew. Or at least, he didn’t show it.
The excitement in his voice when he handed his mother the book was almost unbearable. All he wanted was lego. He never said things like, ‘all I want is to be better,’ or, ‘all I want is to go home.’ He was quite happy, outwardly, to suffer, and smile, and build.
What Danielle admired most about Adam was his ability to stay strong, and take whatever life was throwing at him.
It was often said the two of them were linked, in some strange way, feeding off each other’s energies, because Danielle never left his side, and Adam never gave up. People would say that the moment she decided he wasn’t worth trying to save anymore, she’d lose him; and maybe that’s what happened, but no one can ever be too sure.
“Adam, sweetie,” said a nurse. Her voice was sickly sweet, and almost condescendingly nice. “Let’s put the toys away now and take your temperature, hm?”
The entire mood of the room changed as Adam glared at her. His eyes were no longer wide, and his face had become stern.
“Just five more minutes, OK?”
Adam’s obsession with lego started early in his treatment. Because his immune system was so unstable, and virtually non-existent, he couldn’t leave the house, or the hospital when he was there. Visitors had to take their shoes off at the door, sanitise their hands after touching things, or eating. Sneezing or being sick around him was a sin. They even had to keep Melanie away from him when she had a cold.
They called him the Lego Master. It was a fitting title for a 10 year old that had completed hundreds of Lego structures. It was his life, because he had nothing else to do. He’d spent almost over half his life not being able to go outside, or go to school, so what else was there to do but dedicate his time to building the grandest, most complicated Lego things he could find. Star Wars’ Millennium Falcon, Lego City, and the Taj Mahal were only some of them – he’d finished them all. He dedicated all his time and effort into building, so much so that he told us he wanted to be an architect, and we told him it was possible.
He had the kind of hope that we all tried to replicate, but could never quite justify – even though I’m sure he’d have known better than anybody, that time was running out.
Dudley was still a big part of Adam’s life. That little dog was almost falling apart, but he was Adam’s best friend. It was always hard for adults to understand the connection Adam had to Dudley. Of course he knew it was a toy, but that didn’t mean the comfort wasn’t real.
About four months before Adam’s 10th birthday, he woke to the strange sounds of something clawing at his bedroom door. When he opened it, a real-life Dudley jumped up at him, and started licking his face. It was the happiest I’d ever seen him.
Adam was smart, stubborn, and incredibly bossy when he wanted to be.
“Just let me finish this, you take my temperature all the time anyway. It can wait.”
It couldn’t wait. Todays test results would determine whether or not he could go home. But where was home? Where was it, really? The hospital bed he often found himself in was more like home than the place he so frequently dreamed of being. Sometimes he even forgot what it looked like.
“My walls are blue, right?”
“No, Adam, they’re… almost white.”
“Oh. I thought… I thought they were blue?”
“No, baby. They’re white. Your bed is blue.”
“Oh, that’s right. My bed.”
Their house always had that stale, clean hospital smell about it. It was, in fact, probably much cleaner than the hospital, but nonetheless, it was cold like one. Not exactly cold temperature wise, but the vibe being thrown around the tight, white walls was enough to make you shiver.
Adam would spend two more months in the hospital, before being cleared to go home.
“Test results came back clean. The cancer is gone. You’re goin’ home, little man.”
This was the news everybody was waiting for. The jump-for-joy type of news. He was better. Everything was fine.
But everything was not.
It was only a matter of time before complications rose, and Adam was back in hospital. Though he was free of the cancer, the chemotherapy had left his lungs so full of carbon-dioxide, they’d hardened, and he was unable to breathe.
Before, when it was just cancer making him sick, he was alive. Lively. He was able to walk; he could smile, talk, and carry a conversation. But not anymore.
While he was still full of life and hope on the inside, or at least as much as we could assume, he couldn’t portray it on the outside.
The steroids they’d given him to help build his lung strength back up had bloated his body to such an extreme that made him completely unrecognizable. His little face had turned into a stranger. No longer were those eyes big. His smile seemed faded.
The bloating, and the fact he couldn’t breathe properly at the best of times, meant he couldn’t walk. He was wheelchair bound, except for when he went to bed, or watched TV.
The worst part was the way he talked. Before, you couldn’t shut him up. He’d just talk and talk and talk at the speed of a bullet train, and that was okay, because he was excited about things. About life. Now, if he spoke too fast, or even at all, he would struggle to breathe. Danielle would have to tell him to, “slow down, Adam, speak slower. Breathe slower.”
“In and out. Slowly. That’s it. Now, what did you want to say?”
4.
Danielle’s life became a tangled mess after Adam was diagnosed with ALL. Everything started to fall apart in the most complex ways. Her marriage was in shambles – Greg was always overseas for business, so he spent no time with her, or his kids. So much so that Melanie doesn’t even call him ‘dad’ – it’s just, ‘Greg.’ It’s not something he likes, but what really can you expect when you leave your family for months, and come back still not giving a damn about them.
Over the years, she became dangerously thin. She was already a tiny person, but it got to the stage where even the smallest sizes were too big on her. Her face was always struggling to smile, and her eyes became sunken, and dark.
She stayed outwardly strong for her son, but on the inside, I think it was slowly killing her.
Greg was different. He might have cared for Adam, maybe a little. He was never around so he didn’t really know them. He never seemed openly caring towards Melanie. What could he do with a girl? She’d sit alone at the table colouring in while he and Adam played on the Playstation. Adam was a boy. It was easier to do things with him. Melanie, as usual, got pushed aside.
In what would become one of the final breaking points of their marriage, Danielle found out Greg had a girlfriend over in Korea where he was working. Apparently he’d been sending her a lot of money – money that was supposed to be for his kids.
Their already loveless relationship meant that she wasn’t exactly fazed by the news – the money issue made her angrier than the affair, but they stayed together for their kids.
“We didn’t need to have them worry about something like that. All of my focus was on Adam. All of Greg’s focus was on… well, leaving. But he was getting the attention he craved, so he made out like it affected him more than what it did.”
It didn’t take much to notice how uninterested Greg was in Adam’s life. One incident in particular sticks out, where his attitude towards his dying son was completely unnerving.
Danielle had left the house with her best friend, Robyn, and left me to sit with Adam and Melanie. Greg was home, but as always, seemingly uninterested in anything, until Adam called him over to sit on the couch with him.
Adam, doing as Adam always did, had an unopened box of Lego sitting on his lap. He’d been told he couldn’t open it until his birthday. That was at least two months away. He was so excited about knowing it was there for him, and he was ridiculously impatient.
“Dad, can I please just open it? Please! I’m suffering here!”
What Greg said next completely threw me.
“Kiddo, you wouldn’t know what suffering is…”
Adam’s face turned white. I don’t think he quite understood what exactly his dad had said to him, but it’s like his body had automatically shut down.
“Well, actually, maybe you do.”
Greg’s complete nonchalance to his son’s condition only made it easier for Danielle to cut him off from her life.
“He’ll stick around ‘til Adam dies,” I heard Robyn say to her once. “He’ll use his death as an excuse to get divorced He’ll act like he’s emotionally damaged, and can’t handle it anymore. Then he’ll take his money and go back to the girlfriend.”
In most respects, she was right.
5.
The steroid treatment really took its toll on Adam. If you were to compare photographs of him before and after, it was most obvious, and you didn’t even have to know him.
Before, his smile was so wide you’d think his cheeks would be sore for days; his eyes, gleaming. He was standing next to his sister, and they were both happy. He’d just turned 9. He was out of the house, and walking around. Still unable to be outside for too long without getting the shivers, but he was OK.
But now, Adam was not Adam. His little, puffy cheeks masked the smile that once was. His eyes looked tired. With a look of hope still strewn across his face, in this photo he’s talking to his friends via Skype. He’s at the hospital, and they’re at school. They’d call him once a week. Danielle is sitting beside him, and the photo captures a rare moment in their lives. A happy one. The photo was taken at one of the direst points in his life. Two weeks before. In two weeks; two short weeks, that smile would disappear forever.
The wait seemed to take forever. Everyone had told Danielle there was nothing they could do. He’d already suffered two cardiac arrests and the doctors were final about what their next move would be.
“The next one. We can’t- won’t, revive him.”
6.
While the life of this little boy slowly started fading, another was being left behind in his shadow.
At 9 years old, Melanie is quiet, reserved and completely misunderstood. Much to her unspoken dismay, her mother dresses her like a proper, pretty girl, and her long brown hair is usually left down, always looking windswept, as it sticks to her face.
Danielle always tells me that, besides her school friends, I’m the only one she really opens up to – and it’s not hard to see why.
Ever since Adam was diagnosed with leukemia, Mel has been pushed aside by almost everyone in her life. It’s understandable to a point, but over the years it just became too much for her to handle, and she stopped trying to impress people and just went along with what was happening.
“I have a lot of regrets in how we treated Mel,” Danielle said, her eyes stinging.
“With Greg overseas and uncaring, and Adam sick, it was hard to balance everything out and spend proper time with her.”
“We were in and out of the hospital so much that I kind of forgot about her, to a point, because everything was so focused on Adam.”
It got to a point where Melanie was almost like “the other child.” I remember once incident distinctively clearly.
Danielle’s mother had come over to visit while we were there, and at this stage Adam was home from hospital. He and Melanie both ran to the door, excited that grandma was there to visit them.
She greeted them by giving Adam a giant box of Lego to play with, and told Melanie that she didn’t have anything for her, because Adam was the sick one.
Melanie, looking absolutely heartbroken, started to cry. It wasn’t a loud, tantrum-throwing kind of cry. It was more like a whimper, a soundless, honest, unselfish cry, because she had been left out and forgotten yet again.
Grandma then decided to give her a pen out of her handbag.
It was a complete lack of friendship and love that she was missing, because her big brother, through no fault of his own, was getting all the attention, and no one ever stopped to ask her how she felt about it.
She once asked her mother, “is it my fault?” And every face in the room turned white.
About a year into Adam’s battle, he needed a bone marrow transplant, and after weeks of searching for a match, they found one. Melanie.
Because she was so young, and the process of extracting marrow is so painful, they had to take the matter to court to decide whether or not they would allow the procedure. After ruling that losing her brother would be more detrimental to her than the operation, they allowed it, and it seemed like Adam would make a full recovery.
When he got sick again, Melanie was the first person to start questioning everything. The doctors, her mum, and Adam, all told her not to worry anymore; that he was fine, and he would be better by Christmas. But he wasn’t, and it took months to convince her that it wasn’t her fault that the transplant didn’t work.
Since he died, she noticed a lack of movement around her. People stopped coming to visit. No one was popping by to say hello, or sleeping over. It was just she and her mum.
In September, around what would have been Adam’s 11th birthday, Danielle received a phone call from the school counselor, who Mel has been seeing since he passed away. The woman was concerned about her mental health.
“She’s sad. Depressed, even.”
This little girl, forcing guilt and blame upon herself for something that she couldn’t have prevented no matter how hard she tried.
“No one likes me,” she told the woman she so desperately wanted to trust. “No one visits anymore. It’s because they don’t like me.”
She never was entirely vocal about the events that so took over her life, but looking into her eyes, it’s hard to escape the reality; she just misses her big brother.
7.
Months flew by with no significant changes. Adam was just as breathless and sick as he’d ever been, and the doctors had nothing left to do but wait.
“He’s in for surgery on Monday. Monday… what day is- Oh, it’s Sunday. Okay. Yes. Surgery tomorrow. Lunchtime. Will you- Yes. The what? Parking doesn’t cost that much… Yes. Okay. Fine. See you then.”
Trying to hide the agitation, which often came from speaking to her mother, Danielle excused herself. She needed air. She needed to breathe in something other than this dull, white room and the stench of it’s disinfected air.
Adam was building. Always building. Life was okay when he was building. It didn’t matter that he was broken and couldn’t be put back together; he could make up for that when he put those thousands of tiny pieces where they were supposed to be. It’s almost like by building grand, exciting things, he could make up for his own brokenness.
September was drawing closer. His birthday. The big 10. Double digits. Everyone had feared he wouldn’t make it; that he’d be gone before he got to celebrate.
They needn’t have worried at all.
September 22, 2010 – the day the impossible boy turned 10.
It was the celebration to end all celebrations. There was lego everywhere; all his friends and teachers from school had taken the day off to come visit him, his favourite football player, a Spider-Man cake. It was every little boys dream.
At one point he got so excited the nurses were worried he’d pass out, so they had to tell him to calm down and put his facemask back on.
“Thanks for coming everyone,” he was giggling as he spoke. He hadn’t had this much fun for months.
“And I just want to say, everyone better of brang lots of lego.”
It’s like he never needed anything more.
When the day ended, Danielle curled up next to him on bed. He looked so small in it. As she put her arm under his head, she whispered, “I hope you had the best day.”
“I did mum,” his voice was tired and croaky. “I love you.”
“I love you too.”
The End.
“If you’ve ever lost someone very important to you then you already know how it feels and if you haven’t you cannot possibly imagine it.” – Lemony Snicket
1.
Those final weeks of illness came at the worst time for Adam. He was in a hurry. Time was not on his side this time. After years of having all the time in the world, his was finally running out.
All he wanted to do was finish building the Death Star, and God forbid if they asked him to sit up, or eat, or “just pop that over there for a second while we take your temperature.” Taking his temperature was probably his least favourite thing to put down lego for.
He never did end up finishing it. It was over halfway done when they had to slip him into that coma. A week or two longer and it would have been finished; his final masterpiece.
Wednesday, November 10, 2010 -
It was the most unexceptional day. Everything seemed normal.
Two weeks earlier, Danielle had to make the decision to put her unfixable son to rest. The doctors slipped him into a medically induced coma, she flicked the switch, and now everybody just had to wait for his lungs to give, and his breaths to run out.
The hospital was strangely cold that night. Almost like the chill in the air was preparing us for the worst. There were no words spoken between any of us. The only sounds were coming from the machines, and Adam’s slow, steady, tiny breaths.
Then, without warning, the breathing stopped, and as his hand fell slowly to his side, the little dog that had been so comfortably placed in his arms, fell to the floor.
2.
Relatives and friends of Adam are warmly invited to attend his Funeral Service to be held at the graveside in Castlebrook Cemetery, Windsor Road, Rouse Hill on Thursday, 18th November 2010 commencing at 9.30am.
“How do you invite people to a funeral for a ten year old?” Her voice shuddered as she spoke.
This was a long time coming. She’d already made all the plans, all the preparations. She just needed them to be finalised. A day she hoped would never come. A day she wanted to delay forever.
November 18, 2010. Eight days after he’d taken his last, tiny, struggling breath. It was a warm day. The kind of day the sun will sting if you stand still for too long.
The tiny white coffin stood out from the bright, fluorescent green grass – the contrast was almost sickening, but the bunch of green balloons tied to the head of the coffin softened the blow, as it confirmed that green was in fact Adam’s favourite colour. It’s like everything was coming together in the most fascinating, comforting, but grim way.
Melanie was one of the most heartbroken. For years, she’d been there with him; argued with him, hugged him, laughed with him. Her big brother; the person she looked up to the most, the person who had never let her down, was gone.
She put on a brave face. She’s always been good at holding the same, bored, melancholy expression, but today she was smiling. Like it hadn’t really hit her yet. She was wearing a white dress with pink flowers on it, and her long brown hair, as always, was all over her face.
“Go brush your hair again Melanie, we have to go soon.”
Danielle was stiff. Everything about her was pale and taut. The black dress that came down to her skinny knees was a dire contrast to the dress she put her daughter in, and she decided upon a pair of too-big sunglasses to cover her darkening eyes.
There was a knock at the door, and a woman from the funeral home had come to pick them up. It was time.
She described them as faceless. “A countless number of faceless people, standing around a too-small wooden box that was about to sink into the ground.”
She stood beside the coffin, holding her daughter’s hand for the entire service. Melanie held her composure until they played Adam’s favourite song in the background, and lowered the coffin. The only other sound that could be heard besides the song, were the sounds of a 9-year-old girl weeping for her brother.
She kept looking up at Danielle, pretending her father didn’t exist. Danielle squeezed her hand a little tighter.
But she still hadn’t cried. Not a single tear.
3.
Life without Adam was a struggle.
A month went by, and everybody was trying their hardest to carry on.
Christmas could easily have been a disaster. The smiles, the laughs, the love, and the cheer were all forced and fake. There may not have been one genuinely happy person sitting around the table that day, but everyone tried their hardest to make it easier for Danielle.
Walking into that house in the morning was like walking into a wake. Everyone was quiet, and treading carefully. It was too busy. Nothing felt quite right. Like they were all there for the wrong reasons.
Danielle’s sister, Melissa, was drinking; a bad move, especially at 10am. She sat down on the floor next to the Christmas tree, and started crying. Sobbing. Her husband, Glen, had to almost pick her up and drag her off into a bedroom so she could compose herself.
It wasn’t pleasant for anyone.
The hardest part, and I wonder if it as like this for anyone else, was opening the card Melanie handed me upon arrival. It was signed, ‘love Melanie’ – I think that’s when it really hit me that he was gone, because there was one name, when there used to be two.
She took my hand, her in a brand new dress, and she seemed happy; but there was a twinkle of sadness in her big, brown eyes.
Christmas day might have been as hard, if not harder for Melanie as the day of Adam’s funeral.
“It’s not nice having to spend today without Adam. I tried to forget about it and just have fun, but it’s not the same.”
“See,” she says softly, as she points to an empty space under the tinsel-covered plastic tree. “That’s where his presents usually go, but we didn’t have any for him this year. Except I think mum bought him some more lego but that’s in his room, and we don’t go in there.”
The door to Adam’s bedroom hasn’t been properly opened since the day he died. Danielle put everything he owned, everything people gave her in the days leading up to the funeral.
Everything locked away, kept hidden from the world. From herself.
4.
Almost a year to the day, and Adam is a ghost to the world.
No one really mentions him anymore, except in passing remarks – “remember when Adam…”
Melanie still struggles to cope with her loss, but inwardly. Almost always angry with herself, and her father, she doesn’t talk much anymore. She never really had a lot to say anyway, but now it’s more noticeable. No one really knows that much about her, not even her mother. She’s a lonely soul without her big brother, and everyone can see that except Danielle.
Danielle and Greg are finally separated. Their divorce is being finalised, and he is moving overseas to be with his girlfriend.
“It’s not big loss to anyone.” She doesn’t even flinch.
Danielle spends a lot of time living in memory of Adam. The attention people give her makes her feel special, but she won’t acknowledge her grief alone.
On the day that would have been Adam’s 11th birthday, she almost refused to go to the cemetery to visit him. It was the first time she’d ever been there since the day of the funeral.
November 10, 2011, a year to the day, she will walk up to Adam’s school and be greeted by Adam’s classmates, and teachers, and Melanie. They will drink coffee and eat biscuits and stand around the tree they planted for him in the grounds of the school. She will smile and say that she’s coping. Everyone will make an effort to tell her how strong she is, and how wonderful a mother she was.
The truth of grief is that it never really goes away. Lemony Snicket one remarked -“Greif: a type of sadness that most often occurs when you have lost someone you love, is a sneaky thing, because it can disappear for a long time, and then pop back up when you least expect it.”
There is no cure for the grief of a parent with a lost child. Empty holidays, empty hearts and empty beds are the only things that fill the sudden empty life of a mother who can no longer remember what her son’s smiling face looked like.
The tiny dent left in the world by this wildly strong, and positive boy might be forgotten one day, but until then, we can only strive to remember that our lives might end too soon.
Adam wasn’t a miracle. He was just a kid who had the strength to keep fighting an impossible disease. He loved, and he was loved, and every day without him is a struggle for the people who knew him.
As the sun sets over the cemetery, the wind softly blows the leaves off the trees, and they dance their way to the foot of his neatly kept grave. A site that might one day be outgrown and messy, but for now, is perfect and still in every way.
In Loving Memory
Adam James Sheen
Loving Son
September 23 2000 - November 10 2010
