This is me, aged 6, in my backyard in Henry Lawson Drive. My mum would prefer we called it a garden not a backyard but it wasn’t a garden. A garden is a place of flowers like holly hocks, delphinium and sweet peas, or at least daisies. I think my mum grieved for England in those early days and that our suburban home in East Hills was a kind of wilderness experience for her. Sometimes we don’t want to leave the Egypt that we know for the Promised Land, but that is another story, for another time and another blog.
Our backyard at Henry Lawson Drive was exactly that. A yard. A massive expanse behind the house with buffalo turf and gum trees. It had all the icons of the 70s including an above ground Clarks Rubber Pool, a climbing frame/cubby house, a ‘Hills Hoist’ clothes line, an outdoor ‘loo’ and my all time favourite swing set. This was my paradise. I played for hours with my ‘Sindy’ doll and ‘Patch’, my ‘Teary Deary’ and my bear ‘Pooh.’ That backyard was my haven, my escape into fantasy land.
My Dad was an Anglican minister and story has it, we moved to Australia because they couldn’t afford to heat the house on his salary. At least that is my understanding of how things were back in the 70s when we first moved out from England. So here I am upside down on a swing surrounded by all my favourite toys.
I don’t really know what made me think of this photo when I got up this morning except the fact that right now, I feel like my life is completely upside down. As I hang from my knees suspended in space I hold onto my beloved daughter just like I held onto ‘Pooh Bear’ 37 years ago. My other children are not completely out of sight but they do not have my full attention. I leave them to swing tandem style; somewhere alongside me. (Sorry Jack, you are not a Sindy doll, more like Action Jackson – fighting battles of your own!)
I did not choose this journey any more than I chose to travel from England to Australia. No, that decision was in the hands of my father just as my life situation right now is also in the hands of my Father.
As I hang here I can feel all the blood rushing to my head and I try to get some new perspective on all that this is about. It’s hard to fathom why I am in this position. Any moment now I could go full somersault and land on the ground in a heap but there is too much at state. I simply must get back up and on the swing that shifts back and forth on its pendulum. I’m hanging on for dear life, quite literally.
I close my eyes. It helps me remember why exactly did I love that upside down feeling of complete lack of control? In my memory I am that 6 year old again. I look up. This is where my help comes from.
I lift up my eyes to the hills— where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.
The Lord watches over you— the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night.
The Lord will keep you from all harm— he will watch over your life; the Lord will watch over your coming and going both now and forevermore.
Being in the blood cancer ward at RNSH is like being in a convalescent home. There is no joy, only sadness and sorrow. All the patients are in pyjamas except for Sam. She rises everyday to dress as if an outing is in store. If she has the energy and the permission we escape at every chance, the way she feels determines how far we go.
The closest outing is to the ‘waiting room’ which we renamed the ‘sun room’ at the end of the corridor. Yvonne asks “Where will you be?” and I say “The sun room” and she says “Where the heck is that?” rolling her eyes, impressed with my ability to attribute such a nice phrase to such a horrible place. I move the couches to suit our needs. Close to the TV for The Morning Show and an opportunity to see Jamie Malcolm or opposite each other to play a game of cards, or scrabble, or scattergories.
Sometimes we escape on sunny days to the “Fresh” café on level 2, just near emergency. It has an outside ‘courtyard.’ We wear our coats and rug up in scarves since the winter sun rarely makes its path to this concrete square in the middle of the hospital grounds. Some days the drip stand is too heavy to push (like on day 3 of chemo) when three imeds are screwed onto the pole and fluids, mesna, and chemo travel through tubes into Sam’s Hickmans catheter leading directly to her heart, so we settle for the café on level 3. In the early days after diagnosis we were advised to avoid this area due to the risk of infection. But now we live life on the edge, weighing up the risks of the café with the risks of the ward and decide coffee and sanity are worth the chance we are taking.
By Monday Sam is going insane. The noises, the smells, the tastes, the harsh light of the fluorescent tubes and the lack of fresh air are taking their toil on her thoughts. “Mum, I’m so depressed. I have to get out of here.” I leave the room with an idea and run straight into Yvonne. “I have to get her out of here, she’s’ going insane.” This woman is my Mother Superior and I am Maria. She seems to understand our need to escape.
“… How do you make her stay? And listen to all you say how do you keep a wave upon the sand? … How do you hold a moon beam in your hand?”
She summons a nurse, “Disconnect this IV drip and give her the mesna in oral tablets.” Then to Sam, “Go out and enjoy the sunshine.” Disconnected Sam makes her way down the corridors in ‘pose turns.’ Her ballet teacher would be proud. “I’m free, I’m free,” she says on every rotation. The thought of freedom energizers her as we enter the lift and take it the main entrance. Then we walk slowly, arm in arm all the way to St Leonard’s Station. We already know what to order for lunch. The same thing we ordered last Wednesday evening; Brushetta and Gourmet Pizza. I even order a glass of white wine. I am so proud of us until I see the look on her face. “Mum, I’m exhausted,” she says, “I think I am going to faint.” She looks as if she’ll do exactly that and I wonder if I am mad bringing her this far from the hospital to try to help her feel normal. Somehow we make it through lunch and wander back slowly to hospital. “You were very brave, mum, to do that.” Sam says, “thank you, it was nice.”
I return to hospital to find this brief email from Bronte. It says http:// 1000awesomethings.com #748- That feeling in your stomach when you go really high on the swings
It perfectly describes our escape. That feeling is so fabulous because of the risk involved, the wind in your hair and the sun on your cheeks. But I’m glad to be back with the specialists, nurses and to see her lying safely asleep on her bed tired from the journey up the street.
Sometimes the risks of this protocol don’t feel safe at all. Twice over the weekend I kissed her goodnight and prepared to leave after the injection of new chemotherapy into her line. Within minutes she was rocking back and forth, curled in a ball holding her head, crying in pain. I call the nurse who comes running. Sam never ‘cries wolf’, so when she presses her buzzer they come. They call the doctor who in turn calls the ‘on call’ haemotologist. The care here is outstanding but I decide to stay until the headache passes. I am incapable of solving the problem, I am tired, it is late but I stay. I want to leave when she is calm. The doctor advises me to leave, promising that if they need to do a CT scan in the night they will call me. He says that the haemotologist thinks it’s a post lumbar puncture headache and is to be expected. “What else could it be?” I ask. “Well it could be a brain haemorrage,” he says, “but we’ve checked her platelets from today’s blood and we don’t think it is that.”
I swallow hard. The tablets they have given her have relaxed her enough to get her to doze. Feeling helpless, I make my way to my car. I pray, reminding God or more likely myself who He is. “You are my strength and my song. You are a very present help in time of need. You are my strong tower, my deliverer. I put my trust in you. I will not be ashamed. You are faithful and true.” As I exalt the name of the Lord, I relinquish all control. Our lives are in His hands. His ways are higher than my ways. I am reminded that the “battle is won by lifting Jesus higher in the midst of thee,” and the old song to the scripture becomes my theme as I drive home. “The battle is won, by lifting Jesus higher in the midst of thee, joy, joy, joyous victory.” By the time I get home its nearly midnight. The whole house sleeps.
Reid is still half awake and I tell him I need to read and he tolerates the night light as I snuggle with my Bible and an old journal. I refresh myself with words in Deuteronomy. I am so aware that I need “strength for the journey,” that I will need to arise at 6 am and make my way back to the hospital. My goal is always to miss the school zones; otherwise the trip takes twice as long. Satiated by God’s word I fall into a heavy sleep, deep in my mattress.
When I arise I discover that my hands have made their way up the chains and I am re-positioned now, high on the trapeze. I have a new outlook, a new word for the day; surely His mercies ARE new every morning. “Fixing my eyes on Jesus, the author and perfecter of my faith,” I make my way back to 12 D. Later that day I discover why it was so vital to spend that time at midnight in Deuteronomy. But for that the moment I am happy to enjoy the gentle motion of the little swing.