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.

Sunshine

The winter sun seeps thin and white through the cloud cover.  The rains have been sporadic, like the tears of grief when not one year, but two have passed. When the irrefutable fact of her passing has seeped into your bones, and you know, there is no going back.  The rain connects across the Tasman in great arcing fronts. Every year on this date, stretching between countries, across time, back to Kellie’s death, and to her friends and family. Reminding me that time is passing, but the grief doesn’t.  It just changes, like the weather. Shifting the pressure and moving the isobars.  Hail today, rain tomorrow. Some snow among the chilly grey.

rememberingthis beautiful ray of sunshine

I think of beautiful Kellie.  Of how short her life was yet how much of a life force she was.  I imagine her directing the weather like a Greek Goddess, goblet in hand, laughing at the storms.  Revelling in the thunder and sending out lightning from her fingertips; her anger and joy all rolled into one vibrant and terrifyingly beautiful heavenly creature.  Making her presence felt in the skies.

I think of her family with my own mother heart. It’s so unfair that they have to do life without her. I hope they are okay, two years into their marathon. I hope they are finding their own ways to keep her close, to remember and celebrate her astonishing vibrancy. I stand with her friends and family, across the ether, raising a glass in acknowledgement.  That Goddess woman. Gone but never forgotten.

She was sunshine. Straight up, sunshine.

Here’s to you Kellie. X

(I like this version)

 

 

Dear Kellie,

Dear Kellie

I like to think that you can read this from wherever you are. I like to think that because it is comforting to me. And comfort, when it comes to the absence of you, is scarce. So I take my threads of hope in there being a hereafter and I try to weave them into something tangible.  You, looking over my shoulder from another dimension.  Reading about the shock wave of your departure. Knowing that you are missed as much today as this day a year ago.

Truth is Kel, there really isn’t any way of reconciling your departure. It was sudden.  You were such a long way from home… you were meant to come back to us. You are meant to be here. I wish you were.

I spoke with you on Facebook messenger, we talked about the kids, your man, how it was all going.  You said how tired your were and something awful gripped me.  Through all the difficulties to that point you had barely even mentioned feeling low, even though the trials were many.  You were in isolation, and glad for the opportunity to rest.  Then it went quiet. I hoped then that you were getting lots of rest, that you would bounce back onto my screen and tell me how the weekend had been for you. 
But then, I saw a message in our patient group.  Someone said what a terrible shock it was to hear about your passing. I reeled. I messaged you. Kellie?  Did you hear me?  Did my thoughts catch in your wake and follow you to where you are?

I wrote to you on messenger for a while after I knew for sure.  Not wanting to believe you were truly gone. I’d been your online friend since you messaged me to ask if I would help with your blog and it was a fast-track friendship.  I hadn’t known you for very long, but I suspect you had a gift for making everyone feel like your close friend.  Warm, funny, irrepressible. That’s how I found you. I enjoyed our friendship and I looked forward to the futures we imagined, cured and cackling with a glass of wine.  Trans-tasman trips and girlie weekends. We joked about an arranged marriage for our firstborns, the way Mums like us can. Mums who wish they really could make the world do their bidding, keep their kids happy, safeguard the future. Mums who knew we couldn’t do any such thing.

I wish I knew how your family are. But I never joined your personal Facebook page.  We were always in contact via messenger or email and I don’t know how I didn’t think to Facebook friend request you.  I wish I had. I would have loved to have seen all the beautiful things your friends have said about you. To share with them this difficult date, a year since you left us. If any of them see this, I hope they know they are not the only ones wishing you were here.  Sometimes it helps to know there are others keeping the memories alive too; here we are Kel, a groundswell of grief. Your people.

I miss you Kellie. I miss your profile picture popping up. I miss the laughter that you brought me even on my sickest days.  Sometimes I would laugh until the tears squeezed out the corners of my eyes.  We were cyber friends, digital buddies, pen-pals of the keyboard kind.  When my days were awful, you were a bright spot. You funny, irreverent, girl.  I am cast adrift by my grief at your loss, and I knew you for such a short time. I cannot begin to comprehend how your Mum, your Aunty, your best friend are getting on. Your man, your eloquent lad, your beautiful girl. All the people closest to you.

Today, the world has travelled once around the sun since your heart stopped beating. For Mark and Luc and Ash, the rest of your beloved family, your friends; every laborious step of that year has been heavy with longing for you. There will be a silvery path of salt water in the wake of Earth’s orbit, because Kellie, we cannot help but measure our grief for you in tears and time. The earth will keep on traversing that path, and every year as it passes this dreadful date, we will commemorate you. All of the special memories that each of us has. All of the beauty, and liveliness that was you. We will put down our work, our play, our every-day, and remember the way our own worlds stopped the moment we heard about you. The incomprehensible news that you were gone from us. Around the wells of sadness that opened in our hearts, we will ring wreaths of remembering.

If my hopes are real, and somewhere just beyond, your soul is living on; know that we are remembering you.  Know that you mattered to us.  Know that everything you did and said and loved and created left an indelible print in this world.  You’ll be up there wearing some gorgeous jewelled floaty kaftan. Raising a glass with some new friends and old.  Rarking it up in celestial style. We miss you Kel.

xxx

Rach

The Inverse of Adverse

…mothering from a place of pain…

Sometimes, for my writing gigs about parenting, I feel like there are two categories of mother in this world. It’s probably because I write for both groups. I’d like to write for Dads too, but I don’t relate as naturally to the Dad things. When I see a mothering issue, my writerly mind starts to turn it over from the points of view of two types of mum. The healthy mums and the sick mums.

Of course, it’s much more complex than that, because all mothers face diverse challenges every single day.  Many mums we see in the ‘healthy’ camp, are in fact carrying interior burdens they would cringe to let out into the daylight of public opinion, I get that.  There’s a huge crossover between those camps. Life is an imperfect art and really crap things happen all the time. You might be in the midst of creating the most intricately perfect artwork on the canvas of life when it chucks a whole can of turd brown paint over your work. It happens regardless of who you think you are, the category you fit and whether or not the universe recognises that you should have exemption. Your beautiful work of art might not get up on the gallery wall, at least, not until it’s finished. We all carry scars, suffer fresh wounds.  We all have reparation work to do.  The Bad Stuff happens everywhere, even when it doesn’t look like it.

The other day, I picked up one of my kids.  I recognised the car in front of me as one of my friend’s.  I didn’t get out of my car to say hi (although I wanted to.  I am learning to look after my limitations better so I can cope for longer in my upright world).  She knows me, she knows my stuff.  So I sent her a message on my phone, from one driver’s seat to another  “Hello Beautiful!” I tapped.  Because she really is bona-fide beautiful.  This Mum is the sort of Mum that other Mums look at and their insides sink.  She looks perfect.  A tiny little frame, perfectly groomed hair and face, clothes you wish you had hanging in your own wardrobe… if only they made them ten sizes bigger!  She’s got a few degrees, a chic home. Bright, beautifully mannered children.  Oh, and that car rear I am staring at?  Very nice thank you very much.  The lady’s got class …and the means to show it.
And in truth, I really like her in spite of all that, you know?  😉 She’s personable, approachable, interesting and funny.  She’s a genuinely lovely person.  She slid elegantly out of her driver’s seat and came to chat with me at my window. I was struck by her beauty.  Sigh. Suck in your tummy, Rach.  Put on your smile.  I wonder how she really is?

How she is, really, arrived about two minutes into the conversation, when she revealed that she is facing not one, but two, major health crises.  I stared at her flawless complexion and thought about the torment that must be happening behind that beautiful face. Her vulnerable eyes are shielded by reflective sunglasses. I feel so lost for how to comfort her.  Even though I know it.  I know that torment. The ache of the sick mother.  The loneliness of facing your own mortality in the mirror.  The frustrations when the sick stuff leeches into the mothering stuff.  It’s horrible.  Unfair.  It’s life.

My heart is tuned toward the mums who are mothering while sick.  It’s like I can hear them, sobbing in their wardrobes, hiding from their children. I see the images that haunt their night time dreaming, their fears unleashed in a scape not limited by reality.  I feel their thumping hearts as they consider the most awful possibilities. A final severing of the metaphorical umbilical. The thought of life without them in it.  Carrying on.  Of some other person, filling their dent in the bed, their place in the world. The sick mothers, thinking about their babies, as much part of them as their own pulse and breath.  How can you even begin to prepare your babies for a world you may not be in?  And how can you do that without suffocating them in your arms and trapping them in your presence?  How can you step away from the feelings, to balance your mothering, when you live in fear?

There is so much to be afraid of.  But nothing we can do will change our truth.  Big life stuff is an irrefutable fact. It’s just part of the shape and texture of the life we happen to be living.  It’s real. It’s here. There is freedom in speaking it out. In owning it. And there is relief in surrendering expectation to a new paradigm. And because being sick gives it’s own gift of perspective and gravity;  there is something quite extraordinary that we get to tap into.  We get to mentally jump off the expectations of perfection.  We get to let the pressure drop. We get to focus on the things that matter most of all.  If we are prepared to leap into a new way of viewing our crappy situation.

My mother heart projects forward into the future. I look at my babies, so precious.  I think of the time I have with them.  The length of which, no person knows. As unpalatable as it is, the amount of time any of us have is limited.  I think of the quality of that time and I know my purpose.  I want to help my children to become excellent adults.  Beautiful world citizens who are kind, open-minded, thoughtful and flexible.  I want them to make the best out of the crap life hands them. I want them to make our world better for them being in it.  And there is no more artful way to do that then to teach them how to respond to adversity with grace.  How to take even small opportunities and run with them. I’m a sick Mum.  And it is precisely because I am sick that I have a meaningful context and opportunity to help my children be exceptional people.

I resolve to answer my fears with determination.  My situation is a chance that not every mumma gets. I know the value of my time and the importance of my role. I will teach. I will nurture. I will do these things imperfectly and sometimes flat on my back. I will do them with love and an eye on the people my children are becoming. In every adversity there is a teachable moment.  We can do something beautiful in every ugly, uncomfortable moment. We can guide our babies into fulfilling lives.  Show them how to shore-up, talk about it, get through.  How to keep their eye on the value of every given moment.

Don’t waste it, sick Mummas.  My sisters-in-arms.  Embrace it.

One moment, one day, at a time.

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Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?