This is not my life.
I’m trying to focus, bring it in view, make sense of all that is going on.
This pit in the road that feels like a massive hole swallowing me up.
None of this is expected and even when I think I have grasped it, accepted it, that I’m doing okay, something comes from out of left field taking my breath for a moment.
It happened to me like that once on playground duty.
A boy kicked a ball and it hit me in the stomach leaving me coupled over gasping for breath.
Oblivious children all around me continued to make there own demands for bandaids, sick bay passes, permission to jump the fence to retrieve a lost ball. I tried to tell them I couldn’t breath but I had no words. They were still trapped deep in my gut somewhere under that huge pocket of air where the ball had impacted my belly.The children kept on talking but I did not, could not respond. This is much worse.
The doctors are telling me things that I am unable to digest.
Driving home late last night the still framed images of the day pass before me in slow motion and twice I notice a red light just in time to stop the car. “Focus,” I tell myself suddenly seeing the headlines in the newspaper that a mum died on her way home from hospital where her daughter lies in bed with leukemia. Dark, dark thoughts invade my conscious mind. I regain focus. I lift my thoughts heavenward. I pray out loud, I thank God for his promises, I speak His word over my situation, “Greater is He who is in me, All things work together for good for those who love God and are called according to His purposes.”
I remember years ago in Melbourne, Fergus McIntyre praying and prophesying over me.
“Don’t worry about your children, the mark of greatness is on your children.”
Those words are true. My kids are amazing. Little Sam has always been a strong, sassy, fighter. She doesn’t back down, she doesn’t waver. She never has. She defeated death at birth in spite of all the concern about my pre-eclampsia. She defeated death at eight when we were together in a car accident that broke my leg in two places and cut her forhead from her hairline to eyebrow. She will defeat death now. The admission office rang early to say her bed was ready, we should come in.
“What is the latest we can arrive?”
“At 1:00,” they respond.
On arrival I realize we’ve never come this way. Never been officially admitted, instead we’ve always come through ER or from ambulatory care when something went wrong.
Going straight to the admission desk I ask what to do.
“Just sit and wait, there are others in front of you.”
So I do as I’m told and at 3.30pm Sam is finally given her bed.
I wonder for a moment why we had to be here by 1:00 but console myself that we didn’t leave home when they called. At least we had our morning coffee and a browse through the shops.
The doors to 12D remain permanently closed since the infection outbreak.
To enter you must first use the microshield handwash.
When you leave you must do the same. The corridor seems longer than I remember…and more hectic. Nurses are congregated around the mauve reception area. I don’t recognize any of them. Then beyond the desk I see Yvonne at the whiteboard rewriting the patients names and their doctors and bed numbers.
The unknown nurse escorts us to Bed 14. It’s in a ward of four beds. All the curtains around each bed are drawn but it’s clear that all the patients are old. Three overhead TV sets boom the news on different channels. In one bed a lady talks loudly into her phone, loud enough to be heard over everything else.
“Yes dear, I’m more than happy to sleep in the day bed in the sunroom.”
She must be going home.
Dr Chris arrives asking if we’ve seen Dr Greenwood; that the results from the molecular test are back. We have seen Greenwood briefly but only to be told that he’s coming back around 6:00, when he’s finished his meetings and rounds.
“Can you tell us?” I ask, “It’s a long time to wait!”
He’s awkward. Shifts his weight from foot to foot. I sit down pre-empting what’s to come.
“It’s not good news?” I ask.
“No, I’m sorry the results show that you are high risk.”
The words resound in my head like a pounding headache. My heart rate increases. He continues to speak but his words wash over me, unheard, unprocessed. I hear my own whisper over his, rubbing Sam’s leg.
I tell her, “You are going to be fine. We’ve got Jesus. It’s going to be okay.”
They have already begun to look for an unrelated bone marrow donor since neither Jack or Emma are a sibling match.
“Dr Greenwood will be around later then, to answer your questions. Okay then!”
He nods and leaves.
I don’t fully recall what happened next. I know though that Sam and I were left together stunned on her bed. I think we were silent. I think we hugged. I remember the weather guy announcing that Wednesday would be sunny…late showers on Sunday. I don’t know how long we sat there. I know though that Yvonne came in and asked,
“We’ve just been told she needs a transplant.”
“‘Oh I see,” she says in her thick Scottish accent, “but you know, you’ll be okay. Look at the other Sam, he’s so big and strong.”
“But he’s so exhausted all the time,” I remind her, telling her I’m in touch with his mum. “And he had a sibling donor.”
Then I hear myself, my negative response.
“No, you are right, Yvonne. She is going to be fine.”
Eventually I phone Reid to tell him. He plans to come in so that he too can talk to Dr Greenwood.
He makes a few phonecalls arranging for Jack to go to Gara’s until he is home. At about 4:30pm I take the lift to buy Sam a ‘Vvery Vanilla Chiller’ from Gloria Jean’s. A huge lady in a red tracksuit and pink converse shoes joins me in the lift when it stops at Level 8. By Level 7 she lifts her hand to cover her face and begins to weep. I stand frozen behind her, empathising but so trapped in my own despair that I don’t reach out. I don’t even speak. Like a stone I stand there moved but unable to move.
I am troubled by this even now as I write. I am not one to stand back and watch people suffer. On auto pilot I order the drink then remember I have no cash. I’m not myself.
I don’t know how to function. By the time I arrive back in the ward, wash my hands in microshield, I find Sam flat on her back in tears. Reid is by her side.
“He came! Dr Greenwood came. I asked him to wait but he just kept talking.”
“I’m confused! Were you here,Reid?”
No Reid had missed him too. Greenwood had come early and we both missed the opportunity to fully grasp all that was going on.
Nurse Cassandra arrives. I know why she’s here. She is in charge of all the transplants,
she arranges the sibling stem cell tests, she co-ordinates the search for non-sibling donors as well. This time I’m loaded with questions I never thought I needed to ask. She sits patiently answering them all, explaining the process of the search, the statistics of finding a suitable donor, how the transplant is conducted, how long it can all take.
All of this took place before 5pm yesterday. The images turn back and forth in my head like the images on one of those view finders I loved in my childhood. I keep flicking back the frames, to look again, wondering what I’m missing. I feel like taking out the disk and replacing it with a happier theme.
As I write and recall these events, I wait outside X-ray where Sam is about to have yet another Lumber Puncture.
There is so much to tell you but I need to stop.
I need to pray.
Thank you for praying as well.
I’ll probably write again tomorrow.