Mother of God

My mother in law Mary has just passed away, you might have read about that here recently.  She slipped away late in the quiet of night.  I like to think of her last exhale as a sigh; no more struggle. I like to imagine her now, free to move. Happy, laughing and feeling at ease.

The last time we saw her she was having a good day. My husband cracked a joke and her face broke into a sudden grin; she laughed and we saw a glimpse again of the Mary, Mum and Nanna that we know. I like to think about that moment and I am grateful she got to share a laugh with her son. She loved him so much.

In the beginning, I used to think of her irreverently, as
‘Mary: Mother of God’
…because, like many doting mums, the sun rose and shone in the eyes of her boy. As if he himself were God! I thought wryly.  It seemed that he could do no wrong, and when we visited, her whole world would shift to revolve around him completely. I remember we were talking about him one day, soon after he and I had got back together again after a breakup; I stated what I thought was the obvious, “-yes, but even he is not perfect you know, Mary”. She looked at me and her mouth dropped open, just for a second, and I realised that in her eyes, he just was.

mary-mother-of-god-iconOf course, I wasn’t a mother myself then, and now that I am, I understand her better. In her eyes, her son was perfect. She loved him completely and unconditionally.  That kind of love is the special reserve of mothers. He is a lucky guy to have been so loved, so adored. I’m sure it is part of why his self esteem is so robust. She has always been his unwavering cheer squad, his bringer of supper and endless cups of tea.

Sometimes, believing that your kids are perfect makes it hard to love their partners. Mary and I didn’t think the same way, and there were times that I thought we would never breach the awkward misunderstandings between us. It seemed impossible for her to know that we were actually allies in the same quest; to love the man she raised and the man I chose. Maybe I just wasn’t the sort of girl she understood, but I always felt the love I gave him was not the love she thought he needed.  I agonised over it for years, wondering how I could do better or convince her that my intentions were pure.

I suppose it is common in mother-in-law/ daughter-in-law relationships. Many of my friends would say I am not alone. I persevered with the relationship because I knew that family was more important than those feelings. That there would be a time when she might need me.   As she got sicker and the Parkinson’s Dementia took hold, she often spoke to me about Rachel, her son’s wife. Because in those conversations, to her, I was someone else entirely. During those times, I enjoyed a friendship with Mary that I hadn’t experienced before. It was quite good for both of us.  I’m grateful for all those times when we were able to see each other through fresh eyes, and find something in each other to love.

The visit before last, in a rare moment of lucidity, she told me she just wanted her boys to be happy. My mother heart understood that so completely. Her eyes seemed to implore me to take up the torch, to make sure of it. I held her hands and told her I would do everything I could, but I knew even as I said it, that neither she, nor I could do enough to ensure her sons’ happiness. And that is the pain of love. To want to make everything perfect, to smooth the way, to lower the barrier, to ease the burden. We wish to do this for the ones we love even though we know that  we cannot control the hardships of life. They are not ours to command.

I held him in my arms after we heard that she had passed. He’s a big guy, my hubster. I held that big man and listened to the boy within, as the realisation began to wash over him. I held him and I thought about how far happiness was in that moment, and I offered him instead, comfort. Empathy. I listened and I helped him pack his suitcase. I made him a coffee for the midnight drive home.  I wished I could take away the shock, the loss, the thoughts of what might have been.  I know from my own loss, that those things are the price we pay for having had the love of a great mother. I could no longer take them from him than take the sun from the sky.

I think of Mary and imagine her soaring high above us, her eagle eyes watching out for her boys like she always has.

I know I am failing her still, failing to make him happy in the ways she wanted for him. I cannot be the sort of wife she wished me to be. I will not subject myself to the sort of life many women of her generation chose. I just cannot believe in my heart of hearts that the pathway to marital happiness lies that way. At least, it certainly doesn’t for the hubster and I.  When I am subservient to him, it simply breeds resentment. It’s not our recipe for success.

Still, these days I feel softly towards her for her expectations. In my head, I ask her to forgive me for not meeting them, because I simply can’t.  I ask her to look again at him, to notice. He loves an imperfect woman, lives an imperfect life.  And, he is already happy, in all the ways that count the most.

Rest now; mother Mary.  Rest safe in the knowledge that in any way I can, I carry your love forward into the future. I cannot mother him as you did, those times for him are treasured and past. But your boy, he’s safe in my arms,
I promise.

I don’t think there is a more fitting song than this one for this post, it was written by Paul McCartney, about his own mother Mary who died when he was 14. This one is a cover by Vazquez Sound, I just loved that it was sung by a child, because nothing renders you closer to your inner child than the passing of your mum.  So this is for my man, and for me too.

How do you spell love?

I wrote this draft for the DINET (Dysautonomia Information Network) Newsletter.  I am one of their new parenting columnists.  This piece is about the opportunity Dysautonomia gives our kids to learn about empathy.  If you have been reading my blog, you may remember some of these anecdotes.  It is a US based publication, which is why I refer to myself as MOM!  Do you have any feedback for me?  I’d love to know your thoughts on this aspect of parenting with Dysautonomia.


It’s one of those mornings.  I know it the moment my eyes crack open and the light floods my eyes. There is  a flash of pain as my pupils struggle to assimilate the light. Too bright. The nausea grips my abdomen and somehow, I make it to the bathroom to vomit.  I am there on my hands and knees when I feel a small, warm, hand on my shoulder. My daughter.  She passes me a hair elastic.

“Here, Mom …to keep your hair back” she says, quiet, matter-of-fact.  She is a special soul, my girl.  Kind, thoughtful; empathetic.  I so wish that these traits had not developed through living with a sick Mom.  But that fact is something I can’t change. It just is. We are in this together. My son, similarly, has grown up with it.

Recently I was again, in the bathroom. For weeks I had been unable to poop.  But this day, success. My son raced into the bathroom.  “It’s good to poop!” he whooped, grinning and tossing me a roll of paper with an exaggerated wink. It might be a strange thing to celebrate, in average households, but not when dysmotility will drive you to hospital.  I shook my head in wonder. What kind of extraordinary grown ups will my kids be? They already know how to respond to the distress of others, not just how to articulate their concern but how to behave in a responsive, helpful way. They are matter of fact in their understanding that some things just require action. And they have the ability to see the funny side of things other kids might find horrifying. They just get on and do what needs to be done.  Practical, kind, funny kids.

Empathy is a skill that has been researched thoroughly by those in the fields of psychology, sociology and genetics.  There are actually genes that have been identified as being markers of hereditary empathetic tendencies.  But empathy itself can also be taught and learned. It is easy, as parents with Dysautonomia, to think about all the things we don’t get to teach our kids, about every lost opportunity or failed parenting moment.  But today, I want us to reflect on the gift our illness does give us and our children, in particular. A head start on how to be good humans.

We can look at our illness as the taker of so much. Or we can choose to remember that character is built on adversity.  Ours, but also that of our kids.  Have you ever considered that you look at the world differently since you became ill? Your kids will too. They will have a heightened experience of beauty, a deeper appreciation for relationships, a better understanding of why it is important to make the most out of every situation. They will have that, especially if we are modelling it for them.

Studies show that as many as 1.4 million children in the US, aged between 8 and 18 are caring for a parent, grandparent or sibling with disability or illness. The numbers are undoubtedly higher now.

We can’t change the fact that our children shoulder more burdens than many. But we can be mindful of what they need within the context of their child care-giving roles.  Here are three things we can make sure we are doing to help them.

Talk about it, but not too much
Make sure your kids have age-appropriate information about what is wrong with you. Don’t discuss it constantly, but make sure it is a natural and easy thing to talk about.  Be open to answering their questions. This will help them to reduce the stress and worry about it.  It also helps them to have the vocabulary to explain things to their friends and people in their circle. There might be scary situations that happen; like passing out in front of them. Make sure they have a clear plan for what to do and reassure them that your body is trying to do what it needs to do, but sometimes it doesn’t work right. My son is seven, he explains Dysautonomia this way: ‘something isn’t working right with how Mom’s brain tells her body what to do’.  And that is no more and no less than he needs right now.  If you talk about your every symptom with your kids, it can increase their emotional burden. Try to generalise. We talk trends rather than specifics wherever we can.

Identify a support crew
Caregiving kids need someone outside the immediate family that they can talk to about things. It is best if this person understands the situation thoroughly, is trusted and chosen by your child. They will need to talk sometimes about the difficult stuff. But don’t take that personally, it is a natural and healthy thing for children to be able to discuss things without feeling like they will hurt your feelings.  They need the freedom for that.  This support person/crew might provide time and activities that you can’t. If you don’t have a network around you, try contacting community organisations, churches or your child’s school.  There are organisations who can provide more information.

Respond to their emotional needs
We can do that. Many a deep conversation and tender commiseration has been given right here on my bed, with my kids in my arms. I am able to be present to their feelings. I can empathise with their problems. They both say they love having time with me here. They love that I have time to spend with them. Many well Moms are too busy for that. It’s a gift.  It reminds me of that saying


Photograph by Be CouperResources:
Statistics sourced from the National Alliance for Caregiving, 2009 ‘Caregiving in the U.S’.
Prior reading from the American Psychological Association.
Care Giving USA
Young Carers Australia
Carers NZ
Young Carers UK
Young Carers Canada

Paper: Global perspectives on young caregivers

Horse Sense

Todays post is dedicated to Natalya.  A beautiful person, a stunning dressage rider, horsewoman and an excellent coach.  Once, one of the mothers at Saturday riding said that horses were stupid creatures.
“No,” said Natalya, “They’re actually incredibly sensitive” and I loved her even more.


When I was about 14, life in Lae, where I grew up was getting a bit scary.  There were more and more violent attacks against women; the stories of rape and murder too close to home. That was part of the scenery in that beautiful place.  Violence, unrest.  Contrast, corruptions; trouble in paradise. There were riots and curfews, the township windows were all boarded up.  We had a security guard and a razor wire fence.  Expats were leaving in droves.  
Among them were our friends who had recently moved back to Melbourne. Their kids were all at the same school there.  The school also took co-ed boarders; a happy coincidence.  See, our older siblings were already through their schooling, but Brett and I weren’t.  I had plans.

It was decided that my brother and I would go to that school in Melbourne, as boarders.  It was 3448km away.  But I don’t want to give you the wrong idea. It’s not like Mum and Dad exactly planned for that.  Perhaps I had read altogether too many “In a Pickle at Mallory Towers” style books, but  I was convinced that boarding school would be smashing fun!  All pillow fights and jolly good lacrosse games.  I pictured myself resplendent in serge tunic, opening care packages from home and sharing out toffees. I would be the new girl everyone wanted to be friends with and my new uniform would make me look magically slender and effortlessly attractive.  All the boys would be nice.  And one of them would fall in love with me, pledge to marry me and we’d eventually move to a big house in the country. 

So I got my friend’s mum to send the prospectus to my folks. I had already tried and failed in my bid to go to another Australian boarding schools for girls.  What made this plan so perfect was that my brother could come too, Mum and Dad were sure to go for that! I possibly wheedled and nagged for a few solid months. I may even have filled in the forms and got their signatures under duress.  Cracking effort really.  I got my way. And away we went.

Melbourne was about as different to Papua New Guinea as you could get.  There was no security fence around the boarding house.  There was only one lock on the door.  No dead bolt, no security guard.  We were allowed to walk to the shops.  We caught trains and buses.  We went into Croydon for hot chips (and sneaky cigarettes).  There was an enormous amount of freedom.  At first I found that really hard, I felt insecure in the truest sense of the word.  My homesickness was a shock to me.  Mallory Towers was a crock. My new school was actually excellent, the other boarders and house mistresses were (mostly) lovely… but it just wasn’t what I had dreamed up in my Enid Blyton imaginations.

Down at the bottom of the school, beyond the sports field, there was a paddock.  It’s all built up and developed now, but back then, there it was. I would wander,  cold and displaced, down to the bottom field after school finished for the day.  The other girls would be whacking a ball around the tennis courts, or chatting, or doing homework, or watching RAGE.  I’d grab an apple and head down there, away from everyone. Toward solace. I had a secret friend down there.  A big bay horse with giant molten black eyes.  I called him Licorice.  Mostly for those delicious eyes. He’d see me coming and trot over to the fence, whinnying a greeting across the field.  He wanted my apple, but I felt like he wanted to see me.  To wuffle his warm whiskery breath into my palm and push against me with his heavy head.  I’d talk to him; all about it.  About all of the strangeness I was finding.  About my little lost self.  About missing my home.  About how I made a mistake pushing them to send me away. He’d listen and nudge me, knowing.  Sometimes, he’d rest his head over my shoulder.  I loved that horse.  He was only there for a few weeks.  Or maybe it was that I only needed him for a few weeks; I remember going to see him and he was gone.
And it was strangely, okay.  I’d found my way.



I walk into the stable yard of my daughter’s riding school, and take in a big deep, satisfied breath.  Horses smell of warmth and hay, of dust and the sunshine. I am pushing myself this morning.  But it is worth it.  My girl has such a passion for horses, they are her everything. Her face is transformed, completely absorbed already; fingers wrapped in mane, face against warm neck.  We’ve just arrived and she is home, right there in the loose box, lost in the love of a horse that will never be hers.  My stomach lurches and I struggle to stand upright, I look for a spot to lean.  And I see him, the horse in the neighbouring pen.  He’s new to the riding school, there on trial.  He bends his beautiful head down toward my tummy, pushing gently against me. Hello, I croon.  You are new here They’re nice you know, they’ll look after you, Beautiful Boy.  He keeps wuffling against my tummy.  Blowing warm breath into my jumper. 


He looks directly into my eyes.  I know, he thinks in my direction.  It hurts.  And there I am, back there with my Boarding School bay. I reach up and stroke the soft spot under his forelock.  Thank you, I think back.  The ‘knowing’ is the same gift I received in that paddock, twenty five years ago. But the pains are different, then and now.

Then, the pain of regret, the loneliness of a child-woman.
Now, the pain of illness, the knowing of a woman-child.
And here, this horse, this beautiful, clever horse.
Where did I put that apple?



The first photo in this piece is by Be Couper.  The one above of me was taken by my daughter Bee last weekend.  I took the one of her; we’re with Trina.  She is not the horse I mention here, but is also totally divine.  Thank you Evie for letting us smooch with her and go all papparazzi.  The picture of Bee was taken by me.