Little Girl Lost

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the rainbow comes and goes,
and lovely is the rose,

the moon doth with delight
look round her when the heavens are bare,

waters on a starry night
are beautiful and fair;

the sunshine is a glorious birth;

but yet I know, where'er I go,

that there hath passed away a glory from the earth.

An old school friend of mine lost her mama this week.  Her mama was Clara, a lady whose life converged with my family’s history and made our story better for having her in it. She was a beautiful, gentle, loving person, a special friend to many; but to her children she was the beginning of love itself.  To not have her here with them now must be so hard to come to terms with.

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there is beauty even in the end

Losing your Ma is a journey I know well.  It’s the trip you never want to take, the inevitable traverse through times that test and trouble the very fabric of our identity. Because, who are we without our mothers? Can we walk through life without them? Can we possibly take the torch of their wisdom in our families and communities… are we even ready for that?

I remember how Mum’s death was a relief and also a shock. We’d been with her as she battled seven years of cancer. So it was a relief to know the pain was gone, the struggle ended. But I wasn’t prepared for the finality of death. The absolute ‘gone’ of death. No more smiling waves and see-ya-laters. No more one-more-times.

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The strongest feeling I had the day of my Mum’s death was a feeling of being little girl lost. I remember being about four, lost in the shopping mall. It was a terrifying feeling; an empty wide chasm of fear and abandonment opened up in my little heart.

I retraced the way we had come, hoping to find her back in time. She was nowhere. The tears obscured my vision, I sat down and howled. A nice lady took my hand and led me to the mall head office. I was placated with a lollipop and the loudspeaker called my Mum. When she found me there, my relief was complete.

Losing her to death reminded me of that feeling I’d had as a child. I didn’t know if I could do life without her. I didn’t know how I could carry all the weight of my love for her, now I couldn’t give it to her anymore.  I wished there was a Universal loud speaker system that could bring her back to me.

In some ways, there is. I see her in the beauty of life, even in the peonies that are slowly fading in the vase. I feel her when I am mothering like she did. I hear her words coming out of my own mouth and I see her expressions in my daughter’s beautiful face.  I didn’t know if I could do life without her, but I have. I didn’t think I could carry all that love, but I do. Sometimes, I give some of it back to myself.  I mother myself because she can’t do it anymore.

I still cry a lot about losing my mum. Things set me off. Like trimming our Christmas tree, or a song, or seeing a mother and her grown daughter meandering together through a mall.  Sometimes just talking with my siblings or hearing a laugh like hers can do it. Seeing my children do something my Mum will never see them do. Watching from afar as Clara’s family gracefully carried her through her final days. The triggers are everywhere. The sudden upsurges of grief never far from overwhelming me.

I will always miss her. I will always yearn for her to be here with me still. That’s the nature of love.  There’s no time limit on grief, it is just an ever present part of life without her.

This poem meant a lot to me during the early days of Mum’s absence.  I return to it, days like today, when we are remembering the beautiful woman that Mum’s friend Clara was. She will be so missed.

Daniella, Geoff and all of the Tabor/Ila clan, my heart is with your hearts. It is so hard to travel the days without your Mama. I know you will find strength in what remains behind. But I wish she hadn’t had to leave so soon. I imagine in heaven, our mamas will be together.  It’s nice to think of them together.

Love to you all from my family. Clara was one in a million. A truly beautiful soul.

we will grieve not, rather find
strength in what remains behind;
              
in the primal sympathy
which having been must ever be;
              
in the soothing thoughts that spring
out of human suffering;
              
in the faith that looks through death,
in years that bring the philosophic mind.

The poem is ‘Intimations of Immortality’ by William Wordsworth.

The flowers are my vase of peonies that I can’t bear to throw away; every day they seem more beautiful, even as they draw near to the end.

The Fix Fixation

So once when I was teaching, a mother came to talk to me about her son. He was a plucky little kid with developmental delays.  He was popular in the playground and perplexed in the classroom. We’d been working hard on building his number knowledge, which was minimal when he first arrived in my class, aged 9.  He was just beginning to feel comfortable using numbers up to twenty; early stage numeracy.  Progress was steady, but laborious. When the mother arrived for our meeting, she looked through his maths work and launched:  “Where are the multiplication tables?”  she demanded,  “When I was his age, we were doing multiplications!   He needs to be doing multiplications!”.  It continued, in variations for the whole meeting. She was fixated on the idea that regardless of what he needed right now, what he was able to understand, what was appropriate for his stage of learning, multiplication was the fix because that is what she had done at his age.  I couldn’t get her to see the realities of her son’s situation. If we leapt into times tables before he understood his numbers he would never have a foundation to support later learning.  He’d have huge gaps in his number knowledge.  Gaps he would fall into, over and over as he progressed through school, risking falling further and further behind.  What she wanted for him was a solution. What he needed was her patience, and time.

fixating on the fix

We are a generation of solution-oriented people, aren’t we?  Got a problem?  Well, let’s solve it.  We’ll throw all our resources at it.  We’ll research.  We’ll leave no stone unturned. Surely there will be a way to fix it.  Because if it is broken, that’s very far from what it should be.  We’ll turn the problem over until we understand it from every angle.  Then we will stitch together some sort of plan. We’ll make it right.  Fix it. But what if you can’t? Is there room in our minds to accept a problem that has no solution?

Having a chronic illness that is poorly understood by most doctors has been a problem for me. I’ve been fighting now for a long time to find some answers, a treatment pathway. To find a way out of my difficulties.  I thought I was getting somewhere… and last week I discovered I am no further ahead than I was four years ago.  Is it okay now to give up trying to find a way?

Because that is what I am doing. I am so tired of scouring the horizon for information that might help. For the right solution. I have a diagnosis that I know a lot about, but I am no doctor. They don’t know a lot about it because they so rarely see people like me.  I am so tired of trying to strain to listen for the tempo playing in the minds of clever doctors. I am so tired of reading up and keeping abreast and willing a solution into being. I am so tired of carrying the responsibility of my own healthcare when I don’t have the qualifications or the brain power to do that. So I am putting it down.

Don’t be disappointed with me.  If you are one of those people who have messaged me and urged me on, thank you so much. If you are one of the people who hope that my progress will help your own, I apologise.  Right now I can’t refuel the engine.  I’m all out of determination.  I am going to use the little oomph I have left on smaller things. Hopefully, someone else somewhere will make some progress.  Here’s the baton, if you want it. Maybe some more research will provide the perfect conditions for action.  The sort of conditions that make doctors feel they can make decisions with confidence.  A double blind study somewhere that delivers the big a-ha. A mighty health crash that delivers data up the wazoo.

I never thought I would reach a point where passivity seems like the only choice left. It doesn’t mean I accept my illness. I never will.  But it does mean that I don’t believe there is a damn thing I can do that I haven’t already done. I think I finally accept that this system; all the difficult realities of medicine, do not work in my favour.  And I am going to stop trying to shift this immovable mountain.

If I had some objective data that made it all really clear, it would be easier. If I fell in a different percentage of Dysautonomia sufferers. If I lived in a different country, if I had a particular kind of insurance, if I could see a specific doctor in some other more populated country…. and on it goes.  I am just sick of it all.  Sick of being sick and yet having to fight for help. Why is it that in some cases, our medical systems require so much of the patient, so much more than they can realistically manage?

Also, looking at my current situation as objectively as I can, I do see the problem.  I’ve been fixating on IVIG (intravenous immunoglobulin) as the holy grail for some years now.  I thought, if my case was auto-immune and IVIG could address the rogue antibody action, I could get better. It seemed so logical.  It’s why responding so well to immune suppression filled me with so much hope! I wrongly thought it would help my case for immune modulation. IVIG itself; a blood product rather than a medication, a little bottle full of the antibodies of a thousand donors, seemed like it held the answers for me. Maybe it does. But I’m not likely to ever find out.

Because you cannot just ask for IVIG. It is in short supply worldwide. And it comes with associated risks which must be carefully weighed for each patient.   Here in New Zealand, the approval process is specific. My case would need to come before an approval board who want to see hard data that explains why I should have such an expensive and precious medical resource.  I am not eligible under their criteria. If any patient could have IVIG, just because they have a picture of systemic dysfunction, there would be a run on the blood bank.  No board could approve my case as it stands because of what that would mean for our supply. I get that. And I hate that.  What I would need is a strong letter of support from a neurologist who understands autonomic disorders.  I don’t have one of those.  And some blood screens to come up with a positive antibody titer. Mine is seronegative.  And a series of results from all the tests I have had over the last six months that give a compelling picture.  Mine do not.

So there really is no option for me. Giving up my fixation on IVIG as the potential treatment for fixing me is really all I can do for my own sanity.  I have to let go of it.  I have to pull myself back into this battered old snail shell and wait.  One day, something might happen out there that will help me. In the meantime, I will simply carry on. I’ll do what snails do during a drought.  Batten the hatches. Wait it out. I’ll take it as it comes, whatever that might be.  I will hope that my brief emergence into the sunlight during immuno-suppression might leave me with a soul tan. That my short time back in the race might leave me with some mental momentum.

So I’ll be in my shell for a bit. Don’t be mad with me.  Don’t feel bad for me.
And don’t be sad either, I’m doing enough of all that for all of us.  I’ll be trying to think of that Mum who so desperately wanted a fix for her boy.  There was one, it just took time, and it wasn’t the thing she imagined he needed most of all.

Just patience, and time.

Tyranny of Time

There will be time, there will be time    
To prepare a face to meet the faces that you meet;    
There will be time to murder and create,    
And time for all the works and days of hands    
That lift and drop a question on your plate;           
Time for you and time for me,    
And time yet for a hundred indecisions,    
And for a hundred visions and revisions…

from the Love Song of J.Alfred Prufrock   by T.S Eliot

Drawing by Rachel F.Cox(1)

I’ve written before about how the word chronic comes from the latin word ‘Chronos’ for time. Chronic illness simply means long-term illness. It’s a marathon on every level.  Recently, someone asked me what the hardest aspect of chronic illness is.  Well it might surprise you to know that, for me, it’s not the lack of understanding from society at large.  That is frustrating, but it is something we can actively work to change. And it is not the endless symptoms, medications, treatments and consultations with medical professionals. That is sheer endurance; teeth gritted in perseverance, but not the worst aspect of this life. It’s not even the heartbreaking armchair view of watching the fallout of your chronic illness on your family and friends. It’s something more insidious.

It is the ‘chronic’ nature of chronic illness that is the hardest thing of all. Can you imagine getting sick and being told that you will probably never be well again? Knowing that you will struggle through today, tomorrow and all of the tomorrows beyond that?  Can you imagine knowing that you’ll need to find, from somewhere, the fortitude to handle that?  Because, as T.S Eliot expressed in the touchingly sad poem ‘The Love Song of J.Alfred Prufrock’; ‘there will be time’.
So much time.  Elastic, interminable, confounding time.

And you will use some of it to ‘prepare a face to meet the faces you will meet’.  It will take a great deal of your energy, because you will learn, quite early into your chronic illness, that people don’t really want to hear the truth of how you are.  They’d rather you deliver them a smile and something easy so they can move on. And as time goes on, you’ll prefer that too.  It’s so much less soul destroying than trying to explain into the chasm of disinterest staring back at you.

You’ll spend aeons, deep in your own thoughts.  You’ll find entire worlds there.  Ideas you will kill, relationships that will die. Hopes that will shrivel and fall by the wayside.  Sometimes, entire days will be born and end before you have managed to make a step.  But you will find there, other ideas, dreams and pursuits you will nurture.  The distraction of creating things might just lift you from the fog of your chronic illness, for a time.  You may even create an entirely new you. A phoenix from your ashes. And there will be time for all that.

You will ask yourself, in various ways, for a meaning in all of it. You will send your questions out into the ether and stretch the threads of understanding, like fragile webs, across oceans and intellects.  And perhaps you will understand some things. You may find answers, or may not. But the questions will rest, heavy in your heart. The antithesis of progress, the weight that pulls you backward. The burden of your days.

You will lose your certainty about all of it. You will weigh things up, second guessing yourself, trying to ascertain the tiniest of difference between one option and another. This symptom’s severity and that. And you will imagine futures that beat the odds, tiny tendrils of hope that grow from innocuous research and improbable scientific findings. You will hold these visions dear, until another passes across your screen. And you will revise.  There will be ‘time yet for a hundred indecisions,    
And for a hundred visions and revisions’.  And you will let them fill your mind and wash over your body, until you no longer care for their details.

Because this is what time gives you. The spiral of all things; a fibonacci frond of futility, fragility and future. A thousand ways to make it through.  Sustained only by the fortitude of what lies within you.

So, it is time. For me, that is the hardest thing about living with chronic illness. The best advice for handling the tyranny of time, lies in acceptance. But that is a hard thing to find,  sometimes it flies away in the face of the realities of illness. It must be held like a butterfly, so you don’t destroy it’s wings. Lightly, with wonder. Breath caught in a moment of it’s beauty. Have you found acceptance as you travel time, across the days of your chronic illness?  And what would you say is the hardest part of dealing with chronic illness, for yourself, or a friend or family member who is ill?

What helps you?
For me, it is reading poetry, writing, thinking and creating.
It is letting the ‘slow’ seep into my bones and watching the storms roll over. It’s letting go in tiny increments of the girl I used to know. And believing, even when the sands are trickling faster through the hourglass;

‘there will be time, for you and for me’.

Sarah Phelps -The Dragons

This guest post written for The Chronic-ills of Rach by Sarah Phelps. She is a fellow Dysautonomia patient who has just had a pacemaker inserted.  There relatively few of us with pacemakers, glad to have you among us, Sarah!  I wish you many happy paces with your new bionic addition!

Today, as she battles her post-op pain, here on the blog she tackles the all-to-familiar frustrations of dealing with the Medical Receptionist.  Sarah is also a caregiver to her chronically ill husband, so she has double the encounters with receptionists! Can you relate?

If a doctor's time is gold, then
Source

If a doctor’s time is gold, then receptionists are the dragons that guard it. This makes phone calls to doctors’ offices tricky. I realise doctors are busy people, and I’m glad that they have a team of people to make sure they’re not overworked or overbooked, that they have time carved out for lunch or a cup of coffee.

But it means that dealing with a receptionist is an art form. It requires patience and understanding, but also firmness and a good handle on how the system works. “No, I’m sorry, that appointment is not soon enough. My husband has been marked by the doctor as a category one patient – he needs an urgent appointment”.

If you’re lucky, when you call you get a receptionist with medical training, perhaps one who knows the names of relevant medications, and is able to identify side effects that need the doctor’s urgent attention (e.g. ridiculously low blood pressure numbers). If you’re unlucky you get a bad-mannered or frustratingly clueless one. The other day I had two in a row.

Me:“Hi, I’m ringing to check on the status of the referral the doctor was going to write for my husband?”

Receptionist:“What’s your husband’s name?”

Me:“Daniel”

Receptionist:“Okay…let me see…yes, we have that referral here.”

Me:“Excellent, is that the updated referral?”

Receptionist:“I’m sorry, I don’t know anything about that…”

Me:“Can you check for me?”

Receptionist:“Sure…I’ll just pop you on hold”

*5 minutes of listening to “Your call is very important to us…please wait”*

Receptionist:“Hello…who is this?”

Me:“This is Sarah”

Receptionist:“And what are you ringing about today?”

Me:“My husband’s referral. It’s quite urgent”.

Receptionist:“Right. And what was your husband’s name?”

Me:“Daniel”

Receptionist:“Okay, let me see if we have that referral here…”

Me:“You’ve already checked that. You were going to see if it was the updated one…”

Receptionist:“Oh! That’s right! Did I put you on hold? Sorry, I forgot all about you. Never mind, I can see that we have a referral here for David.”

Me:“No, my husband’s name is Daniel. Not David.”

Receptionist:“Well that’s confusing. This referral clearly says “David” on it.”

Me: “David is the doctor’s name.”

Receptionist:“Oh! Right. Well, do you happen to have David’s birthdate?”

Me:“David is the DOCTOR! No, I do not know the doctor’s birthday.”

Receptionist: “Oh. Oh! Well, do you know Daniel’s birthdate?”

Me:“Yes, it’s ** May ****”

Receptionist:“Okay, thanks for that. Wait a minute, is your husband David?”

Me:“DAVID IS THE DOCTOR!!!”

Receptionist:“That’s right! And your husband’s name is Daniel. Well, we do have a referral here for him”.

Me:“Yes, but it is the updated one?!”

Receptionist:“Oh, I’m sorry. I don’t know anything about that. Let me get

one of the other receptionists for you…”

A quick chat to a different receptionist showed me it wasn’t the updated referral, but thankfully she dealt with that and then sent it off.

Right, next phone call…

Me: “Hi, the doctor asked me to ring and update him on how I’m going with this new medication.”

Receptionist: “And your name is?”

Me: “Sarah”

Receptionist: “Eh? What’s that?

Me: “Sarah”

Receptionist: “Thea?”

Me: “Sarah!!!”

Receptionist: “Maria?”

Me: “SARAH!”
*sigh* This is going to be another long phone call…

How do you go with phone calls to doctors’ offices? I think you get better at it with practice – and I’ve had a lot of practice. A friend of mine calls my phone style “take no prisoners”. I tell her I learned from the best. My Mum is always happy to patiently wait for an appointment when it’s not urgent. But if it is urgent, although she’s never rude, she’s firm and won’t be brushed off.

Got any stories about your dealings with the dragons?

xx Sarah Phelps

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

The Road… is Never Long

There is this thing that happens when you get to hang out with a childhood friend.  The years melt away and you’re back at your pre-baby, pre-wife self. Just yourself. Who you were before your adult roles became the bigger part of your identity.  Before responsibility and change and heartbreak and  all the stuff.  That noisy stuff that makes the mirror blurry.

I spent the weekend with my friend, who also happens to be my cousin. She’s known me for as long as I have been alive and seen me through all kinds of stuff. There’s comfort in that. We know each other’s history from the time before.  We know the dreams we had and the plans we made.  We know the paths we travelled and the ones we didn’t. And here, on the other side of forty we still know who each other is.

Really is.

And that is a beautiful, comforting thing. We both lost our mums in the last decade. Our mums were sisters.  We talked long into each night about grief, being women, the legacy of the women in our family. Being mums.  Being us while we travel through the terrain of our days.  It is so easy as women to lose sight of who your are, were, your core self. Life gets so demanding, and you choose to prioritise based on your responsibilities.  The kids, your husband, maybe your job, your friends.  How often are you the last on the list?  Have you ever been at the top of it?

I remember scoffing at women’s magazines when I was a working mum. Make time for you! Look after yourself so you can look after them!  Yeah right, I would think. There is no extra cash for that.  There is no extra time for that.  There is no one who can take the kids just so I can have “me time”.  Not everyone can afford to be that selfish.  That’s what I thought ‘me time’ was.  Selfish. Unrealistic.  A pipe dream.

And then we got sideswiped by my health problems. And prioritising became about survival. Saving the energy for an ever-more-pared-down-list of the most important, essential, crucial tasks. Spending my ‘spoons’ on the family and getting through the day. Gritting my teeth to manage what small amount of work I could, pushing through the necessary tasks.  No room there for frivolous “Me time”.  Me time was suddenly in surplus; but it wasn’t soul food time.  I was busy working on getting through the storm of body issues Dysautonomia sends my way.  It wasn’t restorative or helpful time. Just grit-your-teeth-and-bear-it time.

So when my cuzzie friend and I hatched the plan to meet halfway between NZ and Perth; in Adelaide, I honestly doubted I would make it. I didn’t think I could physically manage two flights, the days between, the struggle and strain without all my home comforts.  But seeing Erica again was powerful motivation. So I proceeded to hope for it anyway. And it was worth it. It was restorative. Girl time.  The way we can talk about a hundred things and pick up the threads at random times without ever losing our place.  I held her in a hug and felt connected to who we were again.

Maybe you think planning some ‘me time’ or ‘girl time’ with one of your dearest friends is a crazy thing to do.  Maybe you think you are too sick, or too busy, or too tired. I did.  And I booked it anyway.  It was a huge weekend for me. As I sat waiting to board the plane home my eyes filled with tears.  I took myself right to the edge of my coping capacity.  I was spent. I couldn’t walk. I felt so disconnected, dizzy and tired. So worn. But in my soul?  I was fed with the joy of finding my old self again. There’s soul food right there.  Enough emotional energy to make it through the next stretch.

Even if it seems like a crazy thing to do, book out that time for you.  You need it. You may not know just how much until you are there and you see it; you, again. Looking back at you in the mirror.  Always there, just waiting for some quality time with you.

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Deep In Our DNA

My family dispersed like seeds on the wind when they grew up. I remember how it felt, being the last one left at home. The quiet emptiness.  I spent a lot of time with Mum in those late years and as a bonus, I finally got the front seat!  In those years we were living in Sydney.  I still don’t know all the circumstances around the sudden departure from PNG, but I left boarding school in Melbourne to join my parents and my next brother up, stayed on.  He was closer to the finish line.  My Mum was very sad in those first months, adjusting to our new life. I’d come home from school, sad myself and we would sit together on someone else’s vinyl sofa, in our rented house, hold hands and cry.  It all got better, as life does most of the time.  And I do treasure the time I had as the last chick in the nest.

I am one of four kids.  All two years apart; boy, girl, boy, girl.  Pretty impressive family planning… or lucky coincidence?  I’m not sure if having four kids under six could be called luck!  Knowing my mother, I’d say there was no accident in any of it. It was mostly good being the youngest.  They all tease me that I had it easy; I tell them they made the rules tougher, by breaking them before I had the chance. It was great being part of a big family.  Sitting around the dinner table feeling the strength of it, no matter what dramas were going on, feeling the “us-ness” of our circle as we held hands for the compulsory grace before dinner.

Four of us & Timbo(2)

Now, I have a brother in Sydney, a brother in Darwin and a sister in Gisborne.

They’re all a long way away.

But for my recent big birthday, my sister decided she was coming up.  She’s a whirlwind that girl. She began planning, months out from the visit (she’s like Mum that way).  Who would sleep where, what she would bring, what the order of events would be.  There were phone calls, thick and fast toward the departure date. She arrived on the Saturday, helped my hubster put together a primo roast lamb feast for our celebration dinner. Flo arrived with the cakes, (she made two… and yes, I ate them! Yum!).  A new kind of family celebration was had. I sat there at the end of that table, looking around at our circle.  It has changed, but the “us-ness” was present.

My sister, Trissy, spent a night looking after our kids so the BobbyD and I could go out for a night in town. And then, this week, she took them away again for two days and nights in the country with her extended family.  Oh, my!  Such gifts of love!  They are coming home this morning.  I must confess, my nest has been feeling empty without them. But I have slept in, rested and relaxed.  I haven’t had to think about the usual school holiday stuff. I’ve been able to deposit some energy in that account which is usually in deficit. I know the kids have been happy and busy, running around the countryside with their cousin and his cousins. That’s a special kind of break.  I will feel the benefit of her visit for a long time.

There’s a thing, with family.  A kind of familiarity.  There’s seeing your own mannerisms in someone else, and having the same thought patterns about certain things. There’s sharing Mum-memories and feeling like those memories have been shored up for a while. Somehow, when someone else talks about her, I feel like she is less far away.  There’s laughter about things we used to do and petty arguments about what did and didn’t happen in our lives.  There is the frustration of seeing your most annoying habits in someone else.  The mirror family hold up for us. There’s a way of cooking, folding, hanging the washing.  All of it, echoes of my Mum.

I saw Trissy whisk my boy up into a sudden embrace the other day and shower him with kisses.  Like machine gun fire.  Just like my Mum would have done.  I felt a sudden upsurge of grief; then relief. He will know the kind of love she gave because he will know my family. It didn’t end with the loss of my Mum, we still have it.  Deposited deep in our DNA, built into our behaviour.  When ever my kids spend time with my people, they are experiencing some of what it might have been like to spend time with their Granny. Little pockets of love from her, invested in her own kids so that we might carry her on.

Me and my Sis(1)

Newsflash

Screen Shot 2014-05-22 at 11.40.40 pm
I used to watch the news, but now, not so often. When did that change?  
I used to know who was at war with who and what kinds of horrors people were inflicting on each other each day.  Now I find the news is on when I am struggling to get dinner on the table.  It’s the absolute worst time of night to take anything in; the kids are clamouring at the counter, sometimes they are needing school letters signed or doing their last minute homework.  Our family is large and at that time of night there are five or six of us in the dining room. Sometimes, if the homework is done, I’ll try to be a broader citizen. I put the news on and turn the sound up.  The chaos and cacophony reaches crescendo.  I turn it off.  I should probably record it and watch it after the kids’ bed time.  But after bed time is so deliciously quiet and zen… (who am I kidding!  ‘I just need some water!’/  ‘I’m going to the toilet!’/  ‘Just one. more. cuddle!’  The latter always works ‘cause I am a sucker).  What I mean is, after they go to bed, it is my time.  My time with my hubster; if he’s not working.  My time to let go of all the day, disengage and coast.  I don’t want to see the torment of the world out there or carry the pain of those children or shake my head at the follies of youth or tut about some new journalistic low.  I don’t want to think at that time of night.  I need to chill out.
I deserve it.

Or, I’m baking and the choc drops are calling my name.  I pop a few in my mouth.  Why not?  It’s me making all the bakey effort, and I hate baking.  I’m not even going to eat most of these cookies.  I slave and they get wolfed down in a day!  Humph.  Gone in a flurry of after school famish.  All my efforts.  A few choc drops is the least I should have, really.  Should be the whole leftover portion.  After all, I deserve it. Then, it’s 2.45pm and I need to get my skates on for the school run.  A coffee, yes, a coffee might be nice… maybe there is time to call in at the cafe on my way out?  I’m ordering and I spy that gluten free raspberry friand, so far superior to my humble mum creations, beginning to bounce up and down in the display cabinet.  “Hey, Rach!  You’ve had a hard day’s morning!  Eat me!  I will solve all your concerns.  I will soothe all your achey woes.  Eat me!”  And I make friends with that little friand. It would be rude not to, and after all.
I deserve it.

Or, I’ve been in bed most of a week, conserving my energy for the bare minimum.  It’s been miserable.  I feel like a little pick-me-up. So I have a little guilty look over on the Book Depository website, again.  Just window shopping. I believe I should support local sellers, really.  I know I’ve spent more than enough on books in the last wee while, but something new to read?  Why not?  I have to put up with this stupid illness day after diabolical day.  Most of the time I keep the whinges inside my own head.  It bites.  I add books to my cart.  Just a way of grouping my favourites together, I tell myself. Like a neat little pile. I see a new audiobook that would be great for the kids.  I can justify that one easily.  In fact, they need it.  Good for their learning.  I click through to the confirm order page.  I ignore the total and tick the boxes. What?!
I deserve it.

kidwithtyre

Where I grew up poverty was a smell.  A rancid odour of uncleanliness. A reality you couldn’t ignore.  It slapped you in the face and demanded action, notice, emotion.  We lived in a third world country and down on the riverbanks behind our home was a squatter settlement.  The most common sound I heard from that settlement during the daytime was the sound of children laughing, splashing in the river, jumping off the bridge.  A toy worthy of envy was a tyre, toted alongside by a stick, wheeled beside its’ proud owner; belly pushing against skin, malnourished.  Dull eyes and scabby skin. Clothes worn into a polished brown sheen of dirt.  Singing.  Walking.  Feet hardened and yellowed and soles cracked. A wide, woolly headed smile that could crack open the hardest heart.

I think about those kids and I am reminded. We are born fortunate.  We arrive here, our lungs swell and we shout for attention.  We take for granted the care we get.  Food, warmth, love.  We grow in our warm cocoons, surrounded with the comforts of modern life.  Water from the taps, light from the switch, rest from the bed, free education, help from the doctor, subsidies, special programmes, trade agreements, interest rates, infrastructure, welfare.
After all, we deserve it, don’t we?

We don’t deserve anything.
Our rights are not in fact, ours by right.
Nature can give and nature can take.  Circumstances destroy. All we think we own and know to be ours can be gone in an instant. It happens all the time.
But don’t take it from me, you can see it on the News.

I don’t deserve the fruits of my labour or the benefaction of the garden.  I don’t have a claim to this beautiful free country, clean air, real food.  It’s not mine by right, this home, these people I love.  I am splendiferously fortunate. I could have been born into the squatter settlement behind my childhood house.  I could have contracted an illness far worse than my own.  I could have been childless.  I could have been alone.  I could, like millions of women and girls, have been sold into slavery. I am a whisper of fate away from another set of circumstances at any given moment.  I don’t deserve it; all that I have.  But I accept it.

And when I remember to think about how undeserving I am, I am grateful.

 

 

 

picture credits TV3 NZ and  nationalgeographic.org

view an incredible TED talk that made me think.