MIRIAM's LEARNING PLACE

GOOD NEWS

Stella and Donald Cullington at DCLC with ltr Nichola Ferguson, Miriam Hellendoorn and Rebecca Thompson

So much has happened but with this blog I want to acknowledge the generosity of Dunedin residents with the result that the Dunedin Community Learning Centre can continue to function.  What a relief it was to hear that the Lotteries Community Funding has offered support for another three years and that so many Dunedin people, after reading the Otago Daily Times' article about the possible forthcoming closure of DCLC, came forward with generous donations.  At this stage I can name a few, the Accounting firm Deloitte; Mrs Dawn Ibbotson; Stella and Donald Cullington; the Junior School of John McGlashan College who gave half the money they raised by their Readathon (GO WELL Boys!).  And not to forget that every time we buy Anchor Milk products their support of fundraising sets in.

There are so many others and at our recent Pot Luck Dinner Trudy Scott acknowledged the other donors.  She writes in her latest news: 'It was great to meet again or for the first time some of our generous sponsors.  They are truly lovely people with caring hearts.'

Oh, yes, Trudy!  You are so right.  And what a relief for all of us, parents and caregivers of your students, to know that our children will be stimulated and supported by you and your equally generosity-inspiring team.

The amazing work of The Dunedin Community Learning Charitable Trust (The Trustees are Christine Thompson, Sandra Boock, Katherine Sturgeon, Paul O'Neill and Eric Shelton) has to be acknowledged with 'gold accolades'.  The Trustees have gone beyond the call of duty to keep the Centre open and their latest effort is a wonderful pamphlet outlining the DCLC's History, Student Comments, Life Skills, Community Based Learning and their Dream for the Future.  Here are some of the photos and Student Comments in this delightful and impressive leaflet:

"I learn things"
"I like swimming"
"I like painting"
"It's fun"
"We make things"
"We have fun and make friends"
"I like mowing lawns"
"It's fun when the Otago Polytechnic students come for work experience"

And more great news:  In the meantime the Fundraising Committee has met to discuss a few ideas in the pipeline and as Trudy writes, 'they are working hard on behalf of us all.'

Thank you all.  We count our blessings and keep believing in miracles.

NEARLY WINTER

Wake up to snow with a Maruia thermometer on zero.

Wonderful surprise to see the snow this morning.  Dunedin's hill suburbs are challenging to negotiate when snow and/or ice take over.  Schools stay closed as do the motorways going north and south. It usually doesn't last long and we are still young at heart to enjoy the excitement of a different view.

But Miriam will be worried.  She now goes by taxi from her new abode to the Community Learning Centre and the routine of her day will be interrupted when she can't go there because of the weather.

Since she left home I have missed her so much, and deep in my heart still felt cold fear and concern about the new situation.  I cried a lot, especially when I'd go into her bedroom.   But then came Mother's Day!  Miriam gave me a gorgeous wee box with little gifts (bubble bath and a cookie) she'd made herself at CLC and proudly presented them when she and Ray came for lunch at 12.00 noon.  We had a lovely time sitting together, chatting, eating, drinking wine.   Miriam doing her Word Find.  We'd had our coffee and gluten-free cake (Miriam recently had a diagnosis of Coeliac Disease -  phew!!!!) and just after 2 o'clock Miriam put her Word Find in her bag, looked at her watch, looked at me, looked at her watch again, looked at me again - was she trying to hypnotise me???  I thought of the little word circles coming out of people's heads in cartoons  and I could hear her thinking I want to go home.  I knew this routine from previous situations when we were out visiting so I took her hand and said, 'Darling, you are ready to go back?'

Well, you should've seen her face.  A shining beam, wide gleaming eyes, 'Yes, Mum, thank you.'

And I thought, there is now need to worry any more.  It was as if a heavy load had disappeared.  Exactly two months to the day when she left home she showed me that the routine of her new home had become as important (and perhaps even stronger) as the routine she had with us.  What a gift these few words were.  To receive them on Mother's Day made them even more special.

A few days later I mentioned to my sister in Holland what had happened.  She said, 'Oh, that must have hurt you so much!'   And I was glad when I could say, 'No, I don't feel hurt at all, I can only be grateful that my adult daughter has responded in her own way to this latest challenge.'

Routine means a lot for people with Down syndrome.  I can understand that we as parents have been part of that routine in her life and that we now have truly let her go, knowing that she will keep on adjusting to the changes in her life and in her own way will rise to any challenging situation.  The wonderful staff at McGlynn keep telling us that Miriam is very independent! 

There are challenges ahead for us too.  This will be the last winter we'll have in this wonderful house.  More about that in another blog when I hopefully will be able to untangle some gnarled branches.

This morning's photo of ladder in the apple tree (as in a previous blog!)

One more.  I'm like a child when there's snow, can't stop taking photos.

'Think of those lazy, hazy, crazy days of summer.'

MUSIC TIME

Miriam has settled in well at her new home.  We meet regularly and it's good to see that she feels confident.  We regularly take her out: a coffee, a doctor's visit, and she'll come home for the day on Mother's Day. I still miss her but have realised how necessary it has been to make the decision to let her go.  There are still enough challenges ahead.

Dunedin Town Hall: The Octet at the RSA Revue 2013

Last Thursday night, Miriam, Ray and I enjoyed being part of the audience as the RSA Choir gave their annual ANZAC Day Revue performance in our newly refurbished Town Hall.  The choir and their guests gave us a fantastic time.  Bart has been singing in this choir for nearly twenty years and we are always proud to see him being part of a dedicated group of men.  I've been trying to get Foster and Ray interested in choir singing but alas, no luck so far.  'Just because you and Dad like to sing in choirs, doesn't mean we do!'  OK, no problem!!  I don't trust my voice any more but am glad Bart can still enjoy this soul-healing pastime.  At the end of June we'll be in the Town Hall again when he takes part in Verdi's Requiem with the Dunedin City Choir.  Oh, to be a tenor!

Bart ready to sing.

On Saturday we had music of a different kind.  Some of our delightful neighbours in the house next door study music papers at the University of Otago's Music Department and on Saturday they had a house-warming party for their friends.  It was lovely to hear their hilarity. Earlier Clinton and Max had wheeled our barbecue away and as trustworthy neighbours we had been asked to 'cat-sit' their equally delightful young cat Jenny.  Victoria came over with Jenny's basket and her toys and we did have challenging fun trying to keep her inside.  But all went well and Jenny and basket went home at 11 p.m.  Miriam was allergic to cats so after our Liesel died we never did get another cat.

Jenny and Rabbit

This has nothing to do with music but on Friday our back yard neighbour's designer rabbit escaped its hutch by burrowing a hole through the grass underneath the cage and started to enjoy our vegetable garden's selection.  It especially favoured the leeks!!  As these neighbours were away Bart put the gorgeous long-floppy-eared creature in our cat-transport cage.  I chopped up carrots and beetroot leaves.  Jenny, on one of her visits, played tic-tac with the rabbit and probably wondered why we had put her playmate in the cage for the night. The next morning the rabbit was happy to explore the rest of the garden and play with Jenny, go back in the cage at night and spend the day having vegetable-freedom until the neighbours arrived home on Sunday evening.

Back to music again.  Sunday afternoon's Verdi's La Traviata on the Concert Programme was a wonderful occasion.  I do hope we'll get to see it here one day as part of the Metropolitan Opera HD Live Series in our Dunedin Rialto Cinema where I was fortunate to watch this afternoon Donizetti's Maria Stuarda.  What a treat it is to sit and listen to glorious music and watch world-class performers who take our minds away to a totally different world. Today, Joyce DiDonato's voice is divine and her singing and acting as Mary, Queen of Scots was sublime, sublissimo!  I admit I sobbed a lot during the second part and even the 10-minute drive home didn't manage to get my emotional level back to normal.  Even now, several hours later, I still can feel it in my shoulders!

ANZAC DAY

Turmoil in the sky

Tomorrow is ANZAC Day when we remember the men and women of Australia and New Zealand who died in war time, giving their lives so that people in their home countries could continue to live in a free world.  We must remember them.
My own memories as a child in a European country at war are still vivid.  I was fortunate to have had the opportunity to talk to an expert about those often horrific experiences which had left me with nightmares and I feel a deep sadness for those who did not, and still do not now have that opportunity.

The following is a short excerpt from my unpublished novel The Orange Garden where the main character, Anna, visits a War Cemetery in Oosterbeek, The Netherlands.  She then remembers her first attendance at an ANZAC Day Dawn Service in Dunedin.

"Anna drives to Oosterbeek. Near the Old Church stands a monument. Not One Shall Be Forgotten.

Her mind turns back to New Zealand. The Anzacs.

How many graves of New Zealand and Australian soldiers will be at the Arnhem-Oosterbeek War Cemetery?

Large trees, rhododendrons, azaleas, flowers everywhere at the graveside. A memorial stone THEIR NAME LIVETH FOR EVERMORE. White crosses spreading endlessly. So many of them. Far too many. Four RNZAF casualties from New Zealand.

The Cross of Sacrifice at the far end. The sacrifice of war. A war that affected so many people. The cross that faraway families of the deceased had to bear. Grieving from a distance.

Around her people turn to each other, hugging, crying. A young man stands next to her. 'I'll never forget this.'

She remembers the day her village was evacuated, walking next to her mother in the long queue, wanting to help push the pram that held Ada. She closes her eyes, sees the foreign soldiers in their khaki uniforms standing outside the large villa, distributing tea and white bread. Lifting her up, 'How little you are. You are so beautiful. This is why we came. To help you.'

Because of their sacrifice, we had the opportunity to make a new life.

Anzac Day in Dunedin earlier in the year. She'd called Belinda: ‘Will you come with me to the Dawn Service?’

‘I'll meet you outside the Early Settlers Museum.’

In the early morning darkness they gathered quietly around the cenotaph, the air chilly with the first light frost of the season. It was hard to distinguish the faces of old and young people who’d gathered to lay wreaths at the base of the monument. Fresh, green, sharp-pointed leaves dotted with white roses and velvety carnations.

Anna had looked at people standing around her. Had they come to share with others the memories of those who died in the wars? Perhaps even for some those memories were so painful that they still didn't talk about it, didn't allow any silent anger and hurt to surface, afraid of not being able to control that pain.

As the booms of the gun thundered across the Queen’s Gardens, over the city and up the hills, Anna shivered. The daylight gradually appeared as the Returned Servicemen Association's male choir sang Gwahoddiad: 'And He the witness gives to loyal hearts and free, That ev’ry promise is fulfilled if faith but brings the plea’.

Later, their frozen feet slowly thawing near the open fire in her living room, Anna passed Belinda a mug of coffee, ‘That sound. That horrible sound of the gun, reminds me of those guns and the noise of the planes during the war. I'm still petrified when I hear a low-flying plane. Have I ever told you what Dad and I did on our first Anzac Day here?’

‘Can’t remember, Mum.’

Anna passed Belinda a plate with speculaas. ‘We got up early and walked to the Queen’s Gardens via Anzac Avenue. Dad and I were so moved by the service that we didn’t talk much on the way back, but as we were getting close to home Dad said, “Let’s go to Mount Cargill.”'

‘We stood at the top of the hill in the hazy stillness of that autumn morning. We didn't talk. It was too hard.’

Leaving the cemetery with its many white crosses Anna walks to the car. She thinks, Belinda did understand when she said on Anzac Day, Those memories are part of you. But she couldn't see that understanding. Not then.

All these years. So much distance between them. Between Anna and her daughter. Thank God she came with her to Holland. Thank God the barriers are dissolving."

Sunset in Wanaka

AUTUMN

CHANGES

1937 Freyberg Apple Tree

 This is our special apple tree, not only because it's the same vintage as I am but because of its abundant supply of beautiful cooking apples.  Bart has just finished preserving more than 40 jars of apple sauce (in Dutch: appelmoes) which should last us well into next year by which time we most likely will have shifted to a retirement village.  I can't bear to watch him when he climbs the ladder to pick the yearly crop - he doesn't mind. Friends and neighbours get a good supply and they (and we) cope with the occasional creature that has managed to crawl into the apples although the green 'thing' hanging in the tree is supposed to prevent coddling moth doing its destructive work.
  For people outside New Zealand: the grey metal 'bandage' around the bottom of the tree is supposed to prevent possums sneaking up into the tree at night and enjoying a feast.  Oh, yes, it works!  Just perhaps as a matter of interest in case you've read last year's blog 'A Certain Hill' (15 October 2012, about the view from our house here in Opoho) - you can just see the 'town end' of this hill.  The name of the orange rose is Matawhero Magic which we planted in 2010 at the occasion of having lived 50 years in Dunedin.  It's been flowering magically.

Miriam has now been in the McGlynn Home for more than two weeks and she is doing well.  It's hard for her to accept that this has been a final move.  She keeps asking me: 'two weeks'? which has been her respite care time all these years  and I'll have to tell her that later this year we probably have to shift and that it would be hard for her to cope with the mess (Dutch: rommel!) in our home.  On the surface she accepts this but how much of her doubt is painfully internalised we don't know and most likely never find out. 

I still find this final change hard to accept but it's getting better.  The day after she moved into her new abode, I kept looking at the clock, wondering what time I could ring the supervisor at Miriam's new home to see how she'd been, had she slept well?  Had the taxi been on time for the Learning Centre?  The phone went and there was Nylla's voice, reassuring: 'Miriam slept well, had a good breakfast and was happy when she left in the taxi.'   Such relief.  Twenty minutes later the phone went again: Trudy Scott of the Learning Centre, 'Miriam has arrived in the taxi, she looks well and happy.'

I was allowed to cry, wasn't I?  Tears and gratitude for the care and support of everybody involved in this shift - the two people mentioned above; Margaret, the McGlynn social worker and not to forget Zena, the ISIS social worker who helped us in so many ways.  What a thrill to meet up again with Katherine who now works at McGlynn but had been Miriam's wonderful and intelligent personal carer years ago.  McGlynn are fortunate to have her expertise.  And we, we do count our blessings.

 During this process of adjusting I was not prepared for the intensity of grief I felt.  In an email to my friend Beatrice Hale I wrote about these feelings:

'I thought I had not made Miriam MY life, have written a book about her but still have kept my own life [and interests] all these years. Does caring have this effect on most people when they have to let go?  But I'm keeping the Dutch province of Zeeland's motto in mind: Luctor et Emergo -  feeling (and being) overwhelmed but still managing to survive which the inhabitants of the Dutch province Zeeland have had to do when facing the overwhelming power of water.  And I will manage.'

Here is Beatrice's wise answer.  She knows what she's talking about as she and two other experts have written a book about caring for carers - Family Care and Social Capital: Transitions in Informal Care.  It is hoped that this book will be published later this year (watch this space!).

'You wouldn't be you if you didn't grieve so intensely, and of course you will!  Why shouldn't you?

You are so right, you have made a wonderful life for yourself, and done so much of value, for you and for others.

Yes, caring does have this effect on most people … its the nature of the thing, I'm afraid.  Grieving for loss, with such intense love … why shouldn't we grieve when we all have to move on?  Love and care doesn't switch on and off like a light or a tap.  

Take care of YOU.'

Miriam will be home for Easter lunch.  It will be good.

March 2012: Miriam, Katherine and Bart at Miriam's new home in South Dunedin.

LEAVING HOME AGAIN

Tomorrow our daughter leaves home. We know she'll be well cared for in her new place of residence where six people live, four of whom are in wheelchairs.  As Miriam has had regular respite care in different places, she seems to accept this change and will, this time too, soon adjust to her new abode. When she left home in 1995 to go flatting in an IHC flat it was hard enough but as time went on we knew she would be all right.  The following is an excerpt from The Madonna in the Suitcase where I write about Miriam moving into a supported flatting situation.

"Inside my head the internal dialogue accelerated to top gear: How selfish of us, you are no trouble at home.  She needs to become more independent.  How can we let you embark on this just because we want to have an overseas holiday?  It’s time to let go; you deserve a break.  What will happen if your medication for the hypothyroidism runs out?  There will be proper supervision.  But will it be proper supervision?  Let go, let go, let God.

We loaded everything in the car, drove to South Dunedin.  Together we arranged your room.  A mosaic image: your face showing your concentration as you fold your clothes and put them in the drawers of the dressing table.  You sort out your books on the wee table next to the bed and carefully hang your clothes in the wardrobe.  You held on so tightly as we left.  I said, ‘You and Janine will have to come for dinner soon.’

‘I’ll ring you, Mum.’

Driving home was a nightmare.  I imagined you waking in the night, missing us and crying yourself to sleep.  Visions of you burning yourself while you were cooking vied with ones of strange men coming into your flat and damaging you forever.  What if there was a power cut?  We had supplied you with a torch but would you know where to find it in your flat?

During this time I worried about what would happen when we wouldn’t be ‘on earth’ any more.  What would happen to you?  How would your needs be met?  And then I thought of you as a toddler, sitting in your high chair, grinning while you were eating spinach and spilling it all over the chair and over yourself.  I thought of you in our tiny house on Signal Hill Road, moving yourself around in the walker we’d bought.  Friends said: ‘It’ll damage her legs when she uses the walker.  She should only walk when she’s ready.’

But even then I realised that we had to help you and that you were strong, and that you would know when it was time to sit down in your little walker.  You see, darling, we trusted you then and now we had to trust you too.  We knew that this decision had to be made and that we had to let go of you to see how far you could stretch yourself."

Miriam at Lake Tekapo, March 1995. Photo by Janice Rowley

 And so tomorrow we'll go through it again, knowing that this time leaving home will be a permanent move.   At the moment my Heart wants to follow its own beat of a mother letting her disabled child go while Reason tries very hard to come up with the right answers.  The meaning of 'Right' in this case being translated as, Oh, yes, you are getting on, you can't keep this up, your husband is ill, you need time for yourself.


  In 1995 many questions went on in my mind.  Since then I've learnt that it is better to live the questions and not worry about the answers.  And I've learnt to  ask for grace, courage and strength.

 Tomorrow we'll also say goodbye to Pauline, Miriam's personal carer for the last eight years.  We will miss her dedicated support and her stories.

Miriam and Pauline

 I wrote the following poem after Miriam's stroke in 2001.  I have changed the ending.


Leaving Home

I see my daughter lying asleep in her bed,
her life force reduced.
I remember her
as a woman who knew
determination:
going to town, taking a bus,
buying a Lotto ticket,
a cappuccino and a muffin
at the Muffin Bar.

One day she rang:
I’ve got fifteen books from the library,
I can keep them for three weeks.

Her hair spreads on her pink pillow,
her damaged hand lies still
on the lovingly made
wine-red handmade quilt.
Fingers gently spread,
the thumb apart,
the index finger slightly curved,
the same way she held her paintbrush.

Even in her sleep her presence
demands acknowledgement
of herself, her energy,
her understanding.

Tomorrow I'll have to let her go,
she'll sleep in a new bed
in a new place and her warm night-time smile
may be for someone else.


Huberta Hellendoorn
March 2013

IT IS A MIRACLE

Miriam's Sarah Cake

 Last year Miriam turned 50 and I followed the Dutch tradition of making her a Sarah cake. It was massive.

Bart and Miriam at 50th birthday party

Tomorrow she'll be 51.  It will be a quiet day with friends popping in.   Today her birthday was celebrated at the Learning Centre.  As Miriam now has been diagnosed with Coeliac Disease I made two large cakes for the party today, one Gluten Free chocolate cake and the other a Full of Gluten marble cake, both made with gorgeous Dutch cocoa.  It seems they did turn out all right.

 Wonderful news!  Today the ODT printed a short news item on progress made to keep the Dunedin Community Learning Centre open. 

 What a relief to know that they're on their way again for at least the next few months and hopefully for another year and more.  One worry less.  Right now there are quite a few other things in our family that need to be worked out and thought about.  Whenever that happens, I have plenty of time to read in the middle of the night or wander throughout the house.  I made a poem and will add it below.

Nights

In darkness

I walk throughout the house

It is quiet

in the middle of the night

Shifting my feet I listen

to sounds of snoring, stirring, turning.



On the balcony possums thud 
Nibbling bread meant for the birds

I look outside

But my reflection prevents me

From seeing what’s out there

I want to touch my memories

But they stay as elusive

As the ghostlike shadow

Of my night-time body in a dark window.

Huberta Hellendoorn

May 2012