Yes, I know – this post is really late. The reason has nothing to do with apathy or laziness. I wish that were the case. It’s all to do with energy levels. And I wish I had some.
As some of you may have noted, I put a note on Facebook a week or two back, advising my friends that my Girl had slipped into a coma. I can’t tell you how much the love and support from all of you meant to me. So, here’s the story behind that post:
My sister Chookie Lou arrived on the Thursday. We figured that was an auspicious day to invite the entire family over to lunch. Yes, that’s right, I don’t have enough stress in my life so I feel it necessary to create more.
I admit that up until then, I’d been lax. Despite the Girl repeatedly reminding me, here it was mid October and I still hadn’t put up the Christmas tree. So Thursday afternoon, I spent a half hour wrenching fake Christmas tree branches into position and decorating them while the roast cooked. At 4 p.m., Chookie Lou went to pick up Mum, but while she was gone, I got a call from the Girl’s program to say the Girl wasn’t well, so as soon as she came in the door, I showered her and put her to bed.
I thought she’d picked up a bug, so I didn’t give her dinner. Instead, I gave her water to keep her fluids up, and at 9 p.m., after everyone was gone, I went to tuck her in and give her more water. She looked dazed and floppy. When I asked her if she wanted anything, she didn’t respond. So I called an ambulance.
Chookie Lou and I followed the ambulance to Accident and Emergency at North Shore hospital. By the time we got there, the girl was unconscious, only responding to discomfort.
I couldn’t believe it. Seriously, she did not look that bad. I kept telling Chookie, “She didn’t look this bad.” She agreed, but it made no difference. In what seemed like a matter of moments, my Girl had become seriously ill.
We sat with her, going through countless scenarios of what could have happened had I not called the ambulance when I did, when a nurse swept in and took our details. I asked how long the wait was. She told me they were incredibly busy.
“Incredibly busy” isn’t good. I once sat for eleven hours in Accident and Emergency. I told her this was not my first choice. She took one look at the Girl, one look at me, and said, “I have a friend with a disabled boy. She never brings him in unnecessarily either. I’m going to get the doctor.”
We heaved a sigh of relief and gratitude. Two minutes later, the Girl was surrounded by doctors and nursing staff. They X-rayed her, took a Cat scan, put in a catheter, and told me she was in a very bad way. How far did I want them to go to resuscitate her? Did I want them to operate? I told them I wanted nothing invasive, nothing traumatic. Yes, just let her go quietly.
They told me not to worry, I’d made a good decision. I told them it didn’t feel that way. I told them that I when she was stable enough, I wanted to take her home. I didn’t want her dying in a hospital bed. I wanted her to be among her toys and in her beautiful room with all her beautiful things around her. I wanted her to be in a place that was comforting and familiar. They told me it would be hard work, that I’d need support. I told them that’s what she’d want. That’s what I’d want. So at 2 a.m. Chookie Lou and I left my Girl in the A&E, and reluctantly went home.
I woke early the next morning, wondering where I’d find the strength for the next few weeks, months, years, without my Girl. I wandered into her room, looking at all her artwork on her walls, at her beloved toys, at her life here with me. I had no idea how I could let it go. It was too soon. I wanted to call up the hospital and tell them to do everything, everything they could to keep her with me. But at the end of the day, I knew I was only postponing the inevitable. I would only have to go through this all over again. And I didn’t want my Girl to suffer.
At 9:30 a.m. Chookie Lou and I went back to the hospital. My Girl had been moved to Ward 10. The very top of the hospital, in her own room. I knew she’d like that.
But as we entered her room, to our astonishment, the Girl was awake.
“She’s conscious,” I said.
“Yes,” the nurse told me. “But she’s very weak.”
I took my Girl’s hand and said, “Hello, Baby, you gave us a fright.”
She gazed up at me and said, “Eeeeeecccks Boooooox Gaaaaaammmes.”
“Really? I mean, really? You come out of a coma and you’re asking for games?”
“P-p-preeeessssents,” she said.
“This,” I told Chookie Lou, “is what brings her back from the brink. X-Box games and presents.”
“She’ll want Christmas next,” Chookie told me.
“Chhhrrrriiiistmaaaas,” said the Girl as she flopped exhausted back onto the bed.
“Dear God,” I said. “I can’t believe it.”
“You know what?” said Chookie. “I think I can.”
This is the fourth time this year that we’ve played out this scene. Not once has the emotion or the stress or the trauma been any less than the rest. Each and every time, we prepare for the worst. I have it on good authority that this is not unusual; that although people believe that the last months or years of a terminally ill person’s life are a steady decline to the end, it rarely happens that way.
What really happens is a series of traumatic, life-stopping, brain-numbing races to the hospital. It’s a series of heart-breaking realizations, one after the next, after the next, that this is the one – the final one; that there’s no going back this time. What really happens is you keep riding this rollercoaster of constant peaks and crashes. You got through the last one and now there’s this one. If you get through this, there’ll be another. But you never know which one will be the last. You just hang on and keep rolling with it, knowing that somewhere around one of these bends is the end of the line.
I know I’ve said this before, but please think about this: If you know someone who’s caring for a terminally ill loved one, chances are this is what they’re going through. It’s a tiring, traumatic job, and there’s rarely room for anything else.
So here’s my plea: don’t wait. Call them up. Tell them you’re thinking of them. Cook them a meal, send them a card, make them feel they’re not alone.
Because this is a job that no one signs up for. It’s a job with set hours of 24/7. It’s a job with no perks, no set holidays, and there’s only one way to sign off.
And they do it all for love.