The After Hours

Part Two :: A Day in the Life

The phone rings and beeps and gets answer-machined. My sleep doesn’t happen.
Dad calls in with a giant roll of paper for the kids.  They are going to love that!  I see big posters being created over summer, murals and magic pathways and city-scapes and maps. We have a cup of tea and catch up about the family.  His visit is short, but I am grateful. My stamina is low today.  I need to get back to bed before school pick up.  Just a bit more horizontal time to get me through the next bit of verticality.

The phone beeps again.  It is my friend Cami, she is popping in before school pickup.  But I am pleased, she knows me like family, so she bounds up the stairs and joins me on my bed.  She’s one of those pocket rocket girls who always has energy to burn. We chat, solve some problems in our micro and macro worlds and then, it is suddenly time to go.  I gingerly move to stand. My balance has been a little off today and I am wobbly walking down the hall. I sink into the car seat with relief. A fifteen minute round trip for pick up before I need to stand again.

school pickup

Zed is a box of birds at pickup.  He has much to tell me about his day.  We have a little chat about what the afternoon holds and I acknowledge that he has lots of girls to handle back at home. He says “Mum, did you know that you are the only girl I don’t have to handle?”.  Ha!  He’s a funny little fella! His little funnies are an infusion of happiness every day.  The drive is an easy one, school is close to home. I look through the windows of the car at a stunner of a day.  It’s a gorgeous city; a really pretty drive. The breeze tickles through the window when we pull up at the lights.  We’re nearly home. I park the car and pull myself up into a standing position.  The walk inside is short, I make it up the stairs using both hands on the stair rail. Zed and I tackle his homework while the girls do theirs in their rooms.

4 pm.  I look at the clock.  Zed’s homework is complete and signed off in his homework diary. That makes me feel some accomplishment. It doesn’t always get done which makes me feel ashamed. He heads off to build Minecraft Worlds with the girls. I have at least an hour before I need to start dinner, so I sink back into my bed. It’s such a relief.  I can hear happy noises coming from the kids.  I decide to start this second post about the rest of my day.

The hubster arrives, close on 5.  He wants to know if I would like him to cook the dinner tonight. I look at him gratefully.  It’s been a big day of pushing through. It’s a huge relief that he sees I’ve been struggling. I smile and thank him.  We have a little cuddle, a small chat. We’ve been talking about getting some help around the place, someone to help us with the things I am not managing, someone to take the pressure of him. We discuss a new plan that we are happy with and he stands and gets going with the dinner. I think I should take a picture of him doing that, to use for this post.  My legs are so painful as I walk into the kitchen.  Somehow lately my femurs and pelvis feel like they are made of elastic.  So weak and achey. It makes me wobble.  I lean on the door frame and take this picture to show you a man who deserves recognition, but miss his head from the shot.  Nevermind, back to bed.

school pickup(1)

And then I lie here, looking out my window on the late afternoon. I am so weary I don’t know how I can adequately describe it.  My eyes begin to droop and I am floating.  Drifting away on the afternoon sounds… more traffic, an aeroplane, the cupboards in the kitchen opening and shutting.  The most beautiful man in the world is carrying us into the evening. I sleep.

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Dinner is busy.  Five at the table. The Hubster, me, Bee, Zed and Em. CC is on study leave, so she is at the shops.  😉  Yummy food. I join everyone at the table for dinner.  Some nights I just can’t do it, but it’s a big priority for us, so even when it is really hard to sit upright, I push for it. Mealtimes are the catch up session, the time we all get together and learn about what the day brought us all. Sometimes we play word games or construct progressive stories. It’s hiliarious!  Sometimes I’m grumpy and it’s not so much fun.  Tonight was a middling kind of dinner time. The kids discussed the latest developments in their Minecraft worlds. Apparently Em’s virtual cat died when it teleported into a swimming pool. So much laughter about that, so I guess it isn’t as tragic as it sounds.  They try to explain to me that in Minecraft Survivor mode you can die unlimited times. I don’t understand the point of a survival game if you can die and then be not dead.  They give up trying to explain it.  Then Em’s parents arrive to pick her up. We have a reciprocal arrangement with them that helps us to manage the kids’ swimming.  Em comes to us on Wednesdays and her parents do the swim run on Fridays.  They are our neighbour friends.  Thank goodness for them. It makes so many things possible.

Tomorrow, the cleaner will come to give our house a proper clean. I look forward to Thursday afternoons, such bliss to have clean floors!  Sometimes I will go and sit in the bathroom after she has cleaned it just to breathe in the smell of the cleaning fluid.  It makes me happy to know it is clean. It won’t last long, but for that moment, it is perfect. We need to prepare for her, so after dinner I perch on Zed’s bed and try to wrestle his recalcitrance into the form of a cleaning robot.  I thought he’d be happier to clean up if we used the robot voices. But, no. There are knights and soldiers and motorised hamsters hanging out with elaborate cardboard sculptures and dirty socks. Time to get on it.  It takes us a long time. By the end of it, Zed’s stuffed toys and I have all gone to bed, long before the kids.

school pickup(2)

We’ve got great kids; they’ll choose their own audio book and get themselves sussed for sleep time, usually.  Tonight Zed is particularly tired, so he melts down before bedtime; his Big Daddy picks him up and carries him into bed.  Bee gets herself organised for school before her later bedtime. Late Spring evening winds are tousling the branches of the tree outside my window. I am finishing this post. Mentally toting up the jobs I didn’t get done today. Berating myself for being so useless, for being such a drain on my husband. I check my thoughts and console myself with the thought that soon it will be time for my favourite cuppa.  The ‘after hours’ cuppa with my man.  I make my way back out to the living room and we sit/lie in comfortable companionship, tonight we’ll watch some Sci-fi we’ve saved.  The whole time we are watching I will be jiggling my feet and flexing my ankles.  It doesn’t help the peripheral neuropathy but I instinctively try to fix it by moving. The pins and needles and burning sensations will make it hard to focus. I will go to bed before ten. I will feel like I have been running a marathon all day.  I will sink into bed like I haven’t seen it for days, even though today it has been my cradling arms of a mother, the sanctuary of my sickness.  The place where I pass my days.  Hello again, pillow.  No need to ask you how you’ve been.

…and the lights go out on another day…

A Crazy Little Thing Called Hope


When my mother was dying, she thought God was going to heal her.  It was a crazy little thing called hope. She thought it because He’d promised her that in the scriptures that she’d religiously memorised and spoke aloud every day.  She was a woman of faith, and that meant that even though it didn’t seem like she was being healed, she believed it with every fibre of her being.  Her faith was so strong that on the day she was admitted to hospice, she asked me to take a ‘before’ shot.

“What do you mean?”  I asked, already concerned.
“A picture of me with this tumour, before God heals me and it is gone.  It will be important evidence for when I am telling people all about it”, she asserted.  Then she stood for the photograph, beside her last bed, her tiny frame almost overwhelmed by a giant tumour in her abdomen.  She maintained this kind of denial (it was the only way I could understand it, to call it that) for as long as she could.  She held on to it valiantly.  I was so horrified by it, and by the visitors who came in and prayed healing prayers. I was afraid that she would miss the opportunity to say the things she might want to say, and to hear the things we wanted to tell her, about how much we loved her, about our need for her.  In growing desperation, I spoke to the hospice counsellor.

“We’re not built for mortality,” she explained.  “Everything about the human condition is built around the need to survive.  It is our strongest instinct, our greatest drive.  How can one face one’s own death?  There isn’t a right way.  There is only the way that works for each individual.”
I went back into my Mum’s room and sat quietly beside her.  Memorising her hands, her fingernails,  the colouration of her skin.  She seemed to be asleep. I listened to each breath, each one painfully bought.  Something broke inside me.  I think it was my heart. I thought about her beautiful self, struggling against a reality she didn’t want.  I thought about how tired she must be, fighting for air, clinging to hope.  I didn’t want to wake her, so I cried my silent screams into the sheets of her bed and drowned my despair in tears that ran all the way to the sea. My Mummy was leaving me.

And where was her God? When she needed comfort, of all the times that her faithfulness should have been repaid with peace, where was hers? My heart welled up with compassion for her, as she gripped on to her last vestiges of hope. So I stopped trying to have the conversations of dying.  I let Mum say what she needed to say, when she could; so she said what she felt to say, not what I thought she should.  I read her Psalms when she cried out.  I held her hand and I slept beside her. I did all the things a good girl should, and then: she was just gone from my world.  Her hand no longer soft in mine.  Her heart no longer loving mine.  Just gone.

And now, my friend Kellie; also, gone.  So recently that our hearts and heads can’t take it in.  She wrote to me about hope many times in the months before her treatment.  She considered calling her blog about stem cell therapy “A Crazy Little Thing called Hope”.   These are her words about hope:
“…the whole hope thing is pretty integral to me as I was seriously losing hope. Maybe I’d even lost hope – don’t tell anyone!! But just having an inkling of hope made such a difference and it was so surprising how quickly the hope gathered momentum and how it then sort of manifested its own good luck”.
Then I found this little meme and sent it to her, but now I look at it and I wonder again, where was her God?   Kellie has gone too.  And she had so much hope.  But it didn’t keep her alive.

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And then, in this dark place of loss, deep in my remembrances of these two extraordinary women, I wonder, where has my own hope gone?  Has it evaporated?  I don’t feel hopeful. Will it return? What tricks of my mind will I find to keep me pushing forward, seeking help, searching for answers?  Is there something I can do to find it, or do I have to look for it, like a tiny dandelion seed floating on the breeze, passing by right in front of me at the perfect time.  Is hope that ephemeral?  My tired brain is weary of the measured and sane approach.

Kellie was right, it is a crazy little thing, hope.
But maybe it is all we can do.
Maybe it is all we really have.

Do you have hope?