"Come Out to Play - Jamie's Story", by Lynne Dale
Summer is coming and soon it will be swimming and holidays, parties and Christmas, but Jamie won’t go to the parties. He seldom gets invited anywhere and he won’t swim. He’s afraid of the water. So many things scare him. Holidays are a nightmare of boredom and frustration. Only Christmas is joyful because it holds the magic of Santa.
In his desperation to be loved and accepted, he clings to the reality of Santa in the same way a koala clings to its mother.
Even getting him to the park is difficult, especially on a day like today – a therapy day. We trudge to our favourite spot, take off shoes and socks and let the warm grass underfoot soothe our bare feet, tired from walking too long. He towers over me and it’s a relief to move out of his shadow and into the sun.
The wind is blowing gently, the sun is shining and the park is filled with wiggling, squealing children. Jamie isn’t like other children.
Coming to the park is important for us both. This place is familiar; it doesn’t scare him and we need the calm of the park just to be able to get home without shattering.
I leave him on the edge of the sandpit and sit in the partial shade of a tree. The wooden bench cradles me and I take out a book and pretend to read.
After a while he looks bored, stands up and moves towards some children playing on the swings. I hold myself in check, wanting to go to him but knowing he has to do this himself. My back tenses and a headache begins behind my eyes.
“Wanna play?” he mumbles as he shuffles over to the laughing children. His shadow casts a pall over their games and they look up apprehensively. The steroid-based, anti convulsant medication, along with the tumour on his pituitary gland, have caused abnormal growth. His five foot four frame doesn’t match his years or his even younger mind. I sit nearby watching him; and shrink into the seat.
His clothes are clean but ill fitting, mostly elastic stretched to exhaustion. I cannot keep up with his increasing growth or his stubborn practice of choosing his clothing and then dressing himself. Once I used to battle with him; now I settle for anything that covers him. He wears clothing that is easy to put on in the morning and to take off at night. He wears them badly, with one leg rucked around his skinned and scabby knee; the other is torn and dangles loosely like a kite in a capricious wind.
His favourite homemade jumper has a picture of a teddy bears’ picnic patterned on the front. I knitted it for him when he was younger, and we laughed about how big I’d made it. That was when we could still laugh. I used to say, “You have to grow to be a giant to fit into it.” Now though the sleeves barely reach past his elbows and it sits uncomfortably tight, he still wears it. One day, I promise myself, I’ll throw the jumper away, but not today.
He smiles inanely - when he smiles. More often he wears a look of fierce concentration as if trying to figure out what is going on. When he frowns, as he is doing now, he screws up his face. His glasses with their tortoiseshell frames slip down and hang precariously just below the bridge of his nose. He pushes them up with the heel of his hand and continues his approach.
Sometimes they call him names and sometimes they ignore him, in the callous way that children do when engrossed in their own happiness.
Today, the children laugh at him but do not chase him away.
I relax, leaning into the hard wood that supports me, massaging me between the clenched discs in my spine. The breeze blows softly across my face. It is a hot wind that brings the smell of new mown grass; the sound of a lazy fly drifts past and it soothes and comforts. I close my eyes and dream of a day when everything is not a struggle, when the good things in life can be taken for granted and accepted. The book slides silently down and the sun on my back warms me, sending me into a half doze.
A shrill scream erupts and tears through the peace around me. My heart beats faster and my eyes fly open to see a child running past, screaming and holding her hand to her head; bloods seeps through fingers. Jamie is nowhere to be seen. I get up quickly, panic washing over me. There will be time for explanations and apologies later but for now my only thought is finding him, rescuing him if need be.
I run around the playground, searching in all his favourite spots but he is not in any of them. Finally I find him sitting huddled under the deck of the castle, a place used as a jungle gym. His arms are wrapped tightly around his shoulders and he rocks as he cries. Tears streak his face and fall unheeded. His hair, now more dishevelled than ever, has collected most of the tan bark designed to protect children from harm.
He doesn’t see me and I crawl into the space, dirtying myself in the process, to sit beside him. Although I sit nearer than a shadow, I don’t touch him, because I know that unless he reaches out for me, I will hurt him and risk getting hurt by holding onto him.
I lower my voice and force myself to speak calmly. Only words have the power to reach him now.
“What happened?” I ask slowly and with practised calm.
He shakes, silently, shuddering back sobs, and does not answer.
I try again, knowing this may be a futile exercise but needing to try anyway.
“Do you want to talk about it?” I ask, keeping my voice soft and calm.
He nods and inches closer to me so that skin contact is made. He lies down in the dirt with his head resting in my lap and begins to speak.
It is painful for him to tell. He stops often as he thinks through what he has to say and chooses the right words to tell it. Words are not easy for him. Often the words get confused inside his head and he has difficulty getting them out. I sit shadowed by the roof of the play area, and listen closely to what he has to say.
“I…I, hurt her. I didn’t mean to. We was playing, she ran and I chased. She squealed and threw some bark at me… “
There is a long pause and I wonder if I should prompt him when he begins again.
“I got mad, red rag mad… and picked up a rock… It was a big rock. I threw the rock at her and…and… I threw the rock hard. I saw it hit and she started crying. I was sorry then but I didn’t want her to be mad so I ran off and hid…is she alright d’ya think?”
I strain my ears for the sounds that usually follow an incident but there is silence in that area; the only sounds are of children’s laughter as they play and of the passing traffic that never stops.
“I don’t know,” I say carefully. “We could go and look. You could say sorry to her.”
He shakes his head vehemently, ready to be sorry but not yet ready to face the consequences of his action. Tears begin to flow again as a heart-wrenching wail splits the sky. I hold him loosely, patting his hair down and stroking his face until finally his sobs quieten and he lays limp in my arms.
“I forget…don’t be angry, I forget.”
I look at my child and gently pat him as he rests in my lap. A cloud covers the sun and a chill fills the air. I realise that yesterday, today and forever will be the same for him, I will not always be around to shield him and my world crashes in on me.
I weep, my tears mingling with his, and he speaks, his voice slurring even more because he is sleepy from spent emotion. He caresses my cheek, his large hands easily covering the side of my face “Why you sad Mummy?”
I wipe my face hurriedly and smile. It is not much of a smile but it’s all I can manage and it lifts his mood enough to get home without incident.
That night after putting him to bed I sit in my darkened lounge room, watch the night traffic go by, and wonder what made today’s incident so different. Other times I deal with it and move on. Oh, I’ve cried before, tears of frustration and rage, but I’ve never cried so desperately and never before have I cried in front of him. Today the tears were a reflection of my inability to roll with the punches. Today, as if for the first time, the reality hits me. “I need help!” I say to the air.
Since Jamie was diagnosed, my every waking moment has been invested in keeping him safe, in keeping others safe from him.
Jamie changed everything. I loved him desperately. I stayed awake most nights watching him sleep. They laughed at me in the hospital and said, “He won’t disappear, you know.” But I worried that somehow he would.
Money was tight but we made do. We laughed often at small things and Jamie was more my friend than my child. He developed and grew and did all the things children do. When Jamie was five I knitted him the giant jumper. I wasn’t good at reading patterns and I thought if I made it bigger it would save money while he grew into it. He started to grow more than expected while his development slowed. I thought it was just a phase but when the seizures began I sought help.
For two years it was ‘uncontrolled epilepsy’ and ‘drug maintenance’ and ‘nothing more can be done’. Then his behaviour started changing and he became more emotional; little things made him cry, and he cried easily, loudly and without control. He had to be held to manage the flailing arms and legs. For the first time in my life I held him to control his tantrums and not out of love. Sometimes he calmed when I held him but more often he became ferocious. I learned when to hold him and when to leave him alone. It was agony not being able to hug him and soothe away the hurt. Sometimes I hugged myself just to ease the aching in my arms.
Family and friends dropped away during this time and after an incident where he destroyed McDonalds and ruined his cousin’s party, I didn’t blame them. Some were honest enough to say they were worried for their children’s safety; others just left. Only Margaret stayed around. We laughed and cried together and she held me and upheld me. If it hadn’t been for her, I wouldn’t have survived. We ate homemade coffeecake and we exchanged recipes among other things. That cake disappeared as fast as my troubles when I was in her company.
Two weeks before Jamie’s eighth birthday he laughed. Despite the laughter, his face was blank and his eyes vacant. So I made an urgent appointment with his neurologist and on his birthday he got an MRI and an EEG. That was when they discovered the tumour. The words chilled me; I can still remember them vividly, my nightmare truly began. “He has a benign tumour pressing on his hypothalamus. We might be able to operate but he needs more tests before we can make that decision.”
I learned but didn’t comprehend the language of disability ‘precocious puberty’, ‘gelastic seizures’, ‘hypothalamic hamartoma’, ‘cognitive deficits’, ‘reduced impulse control’ and all the while his seizures increased and his behaviour became more erratic. I learned to administer drugs and watch for side effects. I learned to manage tantrums and practice ‘risk management’. I learned to wait for the phone to ring when the school sent him home, for the police to arrive with neighbours’ complaints, for the next incident or accident. I even learned how to wait to live, gladly putting my life on hold so that he could have whatever he needed now.
I measured the parameters of my strength and the depths of my inadequacies, all the while holding tightly onto Jamie by focusing my time, talents and energy into meeting his needs.
“I have to do something,” I cry to the walls. “I can’t go on like this. I can’t bear it!” Hysteria wells up inside me at the thought of all the pointless years ahead, at the thought of no release.
Uncontrolled tears well up and I find myself sobbing. Generally I cry soundlessly so that I don’t disturb Jamie. Today I can’t control the noise any more than Jamie can control his temper. I bury my face in the armchair to smother the noise and cry. However, once I start, I can’t stop. Sobs wrack me and I shake as a tidal wave of grief threatens to drown me. I punch the overstuffed, faded and ripped arm of the chair and scream. A small cloud of dust rises but silence reigns; Jamie hasn’t woken up.
My future looks like a tunnel without end, without light in this darkness. I can’t bear the thought that my life will be like this forever. I want to lie down and give up, close my eyes and sleep forever. I want the darkness inside me to leave and never come back. I want… I want… I don’t really know what I want because my life’s too filled up with need.
I don’t want to be alone any longer. “I don’t want to be alone with only Jamie!” I cry.
If Margaret had been here she would have laughed at my short sightedness and I would have laughed with her. I would have seen the truth sooner. I have to build a life for myself and let Jamie build his own life too. I have to learn to let go. It will be years before he leaves but I don’t have to make him go away because I smother him.
A calm comes over me. I know what I must do. I pick up the phone.
“Hello Margaret, I’m sorry to call so late…yes, it’s been a while…would you like a visitor? I need someone to talk to…I need a friend…I’ll bring homemade coffeecake.”
I sing as I pack. My singing awakens Jamie where the scream didn’t. He comes into the room sleepy and dishevelled but smiling innocently.
“You singing mummy? I like it.”
I grab him and hug him tightly and he hugs me back. Then I spin him around and say softly, “Wanna play? Come on let’s play!”
Winner, 1st prize, While There's Still Time: Writing about putting things right
About the author
Lynne (Kethry) Dale is a mother, grandmother, social worker and watcher of people. Originally she wrote maudlin verse but has moved on to write about life as she knows it. Her work is a kernel of truth surrounded by a layer of imagination.