When Life Gives you Lemons

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Tonight at the dinner table, CC asked me why the fruit bowls are overflowing with lemons.  I explained that it is lemon season, and a dear friend had given me a bag from her tree.  Zed said, “Let’s make lemonade!” and I remembered.  That’s exactly what you are supposed to do when life gives you lemons.  So the girls got stuck into clearing up and Zed swept the floor while I made sugar syrup for the lemonade (1 cup sugar to 2 cups water, dissolved in a pan on the stove, set aside to cool).

I’ve been a bit grumpy with life lately. Tonight was a perfect antidote.
All you do is add the juice of two bowls of lemons to the sugar syrup.  The dilute the concentrate 2 cups to 1 cup of water.  Easy peasy, lemon squeezy!  Tart, but delicious!

Just like life.

Here are the pictures of our happy-making night of lemonade making.  🙂
Have you ever made lemonade?  Either the actual kind, or the metaphorical kind?

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haha!  Love these kids.  CC, Bee, Zed and XiXi.   🙂

The Dysautonomia Divide

Relationships are an emotional engineering feat. There’s communication, so easy to get wrong, a thoughtless word can drive a canyon between two people. There’s the non verbal stuff, body language, expressions, eye contact (or lack of it).  There’s building intimacy and trust, or letting that slide.  Another great divide.

There are so many unintentional ways we can trip our relationships up.  My primary relationship is with a man, so we have gender difference warping our perspectives and carving new terrain for intrepid exploration.  He’s direct.  I’m sensitive.  What a winning combination. Not.

Sometimes I’m tired of strapping on the explorer kit and mapping the divide.  I get frustrated and fed up with the effort it takes to make it all work. It’s not easy maintaining a healthy relationship.  Is it worth it?  Absolutely.  But when I am scaling the sheer slick rock face of another misunderstanding, I think how nice it would be if we could cut to the chase and mind meld.

A little discussion was had this morning about Zed’s school concert.
“I don’t think I can go this time, honey” I said.  I knew it the moment I woke.  It is a fact of Dysautonomia that I miss out on many of the things that really matter to me as a Mum.  That means my kids miss out too.
(sigh) “Is this how it is for single parent families?” he thought out loud.
Then: (another sigh) “We ARE a single parent family.”

Ouch.

He left the room and went on to the next thing before he could see my eyes fill with tears.  My face turned toward the window.  I stared out at the grey day outside. My thoughts weren’t very pretty in that moment. I thought about what I must be to him. He doesn’t know how it feels to be inside this body.  He sees, this lump in the bed. This drain on his energy and patience. The not-so-silent partner, making my demands but not able to support him every time he needs it. I thought then about how unattractive I must be, this lumpy useless person I have become. Often so lost in my own health struggle, there is little left to give.

And then, I got really angry. I assessed who I am as a parent.  What I offer my kids in spite of my compromised abilities. I thought about all the things I do manage to get to, the smile-though-the-small-talk just for the chance to see my kids do something at school. The meals I cook, gripping on to the bench and willing myself through to the finished stage. I thought about sitting up at the bench to pre-wrap sandwiches and lunchbox snacks, long after my best-before had been and gone.  About morning cuddles on my bed with my babies, good long deep-and-meaningfuls. I thought about all the little bits of evidence that I am doing my best, despite Dysautonomia.  I am still parenting.  I whipped all that up into a whirlwind of objection.

And I told him how much it hurt to hear him suggest he parents on his own.
He was exasperated.  “That’s not how I meant it!  Why can’t you take it the way it was intended?”
And again, we are surveying the divide.  We decide we can, with some teamwork, breach the gap.

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These discussions aren’t uncommon for us. Relationships are hard work.  Once our bridge was built, we took a moment to discuss the difficulty of relationships in the context of chronic illness.  I asked if I could write about our morning argument and he agreed. I asked him what the worst part of our marriage is for him. If you too are living with chronic illness, you know all too well what the perspective of the sick person is. Here are his reflections from the bloke point of view, the other side of the dysautonomia divide.

“One of the hardest things to cope with is the inconsistency around the margins. I can never predict if you’ll be able to help or be of no help, I have to be able to roll with that. Even when I’m exhausted from a big day.

I carry a lot of guilt towards the kids, I seem to spend so much time doing necessary stuff around the house instead of hanging out with them or doing fun stuff.

I have to watch myself.  It is easy to compare what would’ve been with the way it is. That can be really depressing.  It’s best if I don’t compare.  I feel sad about what the kids are missing out on by not having an active mum. I try not to think about what I am missing out on.

I am balancing the challenge of work, sick wife, kids. If I need to do more at home, that’s less time working and earning.  There’s a knock on effect. That doesn’t leave me much mental space. I grind through every day trying to be optimistic. But it’s not easy.  Sometimes I have to go and smash zombies with my cricket bat*”

“So, why do you think our marriage still works?” I asked.

“We love each other, we’re friends, we’re supportive and we don’t let our differences fester. We make ourselves deal with it. Generally we dovetail really well.  We are tolerant of each other.  We respect and trust each other.  We believe that the other has our best interests at heart.  So there is room to argue and get over it.

Also, we’re committed to our future; we’re both working really hard towards it.  I work hard to earn the money and keep the family going, you work hard to find a solution to the health situation. We’re both pulling in the same direction.


It’s like Jack Reacher said in the last Lee Child novel. ‘You have to expect the best and plan for the worst’. I’ve seen you through so many dips. We have always come out the other side at some point. Also, I’m optimistic about recent treatment possibilities.  There are lots of arrows pointing in the same direction. Is that wishful thinking?  That’s what optimism is.

It’s like when Team New Zealand were racing in the America’s Cup. Every time you lose a race it dents your confidence.  But you still have team spirit. You still believe it’s possible. We are a team.”

* don’t worry, it’s a computer game.
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Does your relationship suffer because one of you is ill?
What do you do to keep it together?
How do you bridge the divide?

Tomorrow

When I was a little girl, we lived in Christchurch for a short time.  And right in the centre of the city, there was a cinema.  I remember the steps, and names of movies up on the light boards.  I remember the flip up seats.  And I remember the movie: Annie.  It was my first movie, ever. And it is glued to my memory with steadfast affection. The songs, the message, the sadness and hopeful happiness of that little girl lost; found by her new Daddy.  It was the ultimate rags to riches fairytale and I sang all those songs with blustery seven year old conviction.

When I’m stuck with a day,
that’s grey
and lonely
I just stick up my chin
and grin
and say….

Annie was so optimistic about the world.  So plucky and cheeky and doggone cute.
Of course that shaggy-dog-wonder wanted to follow her anywhere, of course Daddy Warbucks wanted to change her fate. She was the archetype of America’s sweetheart.  The freckle-faced never-say-die psyche of the American people.  A depression poster child.  A disaffected victim come good. The good news story.  And yet all that I understood of her at seven was that she missed her Mummy and Daddy, but they had abandoned her.  So she stuck up her chin, and grinned, and made her way.  Straight into the arms of a billionaire.  I thought she was clever, that little orphan Annie.  And I wanted to sing like her.  So I tried to… (shhh! I still belt out a few Annie tunes when I am on my own, nothing cheers me up quite like it!) but I am no broadway broad.

Annie the movie
Today we took the kids to see Annie, the musical.
It was at the Civic Theatre in downtown Auckland, one of my favourite places.  I love the kitsch Afrikana of that place.  The painted sky of pinprick stars, the gilt ornate features, the elephants, lions and tigers.  I even love the brass bannisters.

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Stepping into that theatre is like going back in time.  I first visited the Civic as a young girl, not long after I’d first ‘met’ Annie.  I was there with my ballet dancing cousins, backstage, marvelling at the catacombs of dressing rooms, the old lightbulbs around the mirrors.  The smell of rosin and hairspray.  They were rehearsing and I was transfixed.
It’s no less magical today.

Here are some snapshots I took of the old theatre.  She is beautiful.


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If you are in Auckland, there is still a chance that you can get tickets to Annie.  I would urge you to, especially if you have kids. The cast, sets and overall performance are
impressive.  I laughed out loud at Miss Hannigan as played by Su Pollard, and I thought Ilena Shadbolt made a perfect Annie.

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Ilena Shadbolt

Her long notes were pitch perfect and sublime. The audience lacked a bit of enthusiasm, but that is what audiences are like here in New Zealand.  Apparently, deep down inside everyone was whooping it up, even my hubster.  So he tells me. It’s just not the done thing to go bananas down in this part of the world (I felt similarly dismayed but the sedate audience reaction to Neil Diamond a few years ago.  But that’s another story for another time).  Going to musicals with my family is making the kind of memory that we will cherish forever.   I love it. As much as I love looking at the show, I love to sneak a look at their beautiful faces as they stare, completely absorbed, at the theatrical spectacle.  I love seeing Zed giggle at the funny bits and sing along, just like I did all those years ago.
I just love being part of their crew, one of their kin, I love belonging to them.

Maybe it’s all too kitsch for you.
And sometimes, it is a hard knock life.
But the sun’ll come up tomorrow.  

You can betcha bottom dollar that tomorrow, 

there’ll be sun.

 

Photo credit:  Ilena Shadbolt as Annie, taken by Hagen Holt photography.