The Great Realisation

May 10, 2020

Jim Mora is interviewing the poet who wrote and read this.

Kiwi-born Welsh poet Tomos Roberts (aka Probably Tom Foolery) has captured the imagination of millions of people around the world with his video ‘The Great Realisation’. The fairytale-esque poem details the grim realities of pre-Covid life, such as pollution and overconsumption, before imagining a brighter future once the pandemic is over. Since being posted last week, the video has been viewed more than 30 million times, and garnered attention from A-list celebrities including Jake Gyllenhal, Jennifer Aniston and Drew Barrymore.

The interview is here.


Hair Love

March 29, 2020

 

 


Living under cancer sword

February 13, 2020

When you’re pregnant you have  hopes and dreams for your babies and their futures, dreams you probably aren’t fully aware of unless you lose them.

Some of our dreams were dashed when our sons were diagnosed with degenerative brain disorders and died young, Tom aged 20 weeks, and Dan 10 days after his fifth birthday.

Life with the boys who had multiple disabilities and passed none of the developmental milestones wasn’t easy, nor was coming to terms with their deaths.

Many people who learn about Tom and Dan say they couldn’t cope if that happened to their children. I’d probably have thought the same until I had to. Then, the only alternative to coping was not coping and through necessity, I coped.

That doesn’t mean I always did it well. There were some very long nights and some very dark days; nights when I fell into bed exhausted by grief but couldn’t sleep, days when it felt like I was stuffed full of dark clouds and was ready to burst. But even at the very worst of times I had the love and support of my husband, wider family and friends, shining light against the darkness of despair.

And our sons, who could do so little, taught us so much: how blessed we are to have that support; that people are people regardless of what they can or cannot do and that ability isn’t a right it’s a privilege

Our response has also been governed by the knowledge that it would only compound the tragedy of our son’s difficult lives and early deaths if being bitter and twisted and focusing on what we’d lost stopped us appreciating and enjoying all we still had and could have.

And we still had their older sister who gave us the joys and challenges children provide.

None of those challenges were major until nearly three years ago when she was diagnosed with low grade serous carcinoma (LGSC), a type of ovarian cancer that is frequently incurable.  Jane, at just 32 years old, was told with current treatments her life expectancy was likely to be only five to 15 years.

Ovarian cancer is the 5th most common cause of female cancer death in New Zealand. Yet we  knew almost nothing about the symptoms. For two years Jane was told by doctors her symptoms were not serious, right up until she required emergency surgery from cancer complications. You can read more about the symptoms here:

Not letting what we’ve lost with the lives and deaths of our sons, blind us to what we still have is, of course, easier in theory than practice and it has been harder still to focus positively in the wake of Jane’s diagnosis.

There’s been a lot of tears, a lot of prayers and a lot of swears. There are nights of restless sleep when I wake to find the nightmare is real, and days when I cry easily and often. But again we’ve got wonderful support from family and friends, and just as she gave me a reason to not just survive but live a full life when her brothers died all those years ago, Jane’s example is providing an inspiration for me now.

18 months after diagnosis and 8 weeks after breaking her leg skiing.

If it’s hard for me as a mother, how much harder must it be for her,  a young woman living under the cancer sword, facing what it’s already cut from her life, the pain of that and the knowledge that it could take so much more?

She could have sunk into depression and stayed there. She could have chosen to focus only on herself. Instead she is doing much, much more.

She is fighting not just for herself but for all the other women around the world who share her cancer, many of whom are young like her.

What will determine whether women like our daughter live or die is research. Rare cancers like Jane’s, account for almost half of all cancer deaths yet receive just 13.5% of research funding.  The limiting factor isn’t science, it’s the money for the scientists to study it that’s lacking.

When Jane was diagnosed there wasn’t any way to donate directly to her cancer anywhere in the world. She knew that had to change if she and other women were to survive. She liaised with doctors,  researchers and charities around the world and founded Cure Our Ovarian Cancer – a registered charitable trust, that facilitates donations for low-grade serous cancer research both in New Zealand, and internationally.

Jane spends most of her days connecting with women and researchers around the world, fundraising for research into her cancer. Through Cure Our Ovarian Cancer and it’s partner charities, she’s helped raise more than $200 000 in less than two years. And aside from a small payment fee, 100% of every dollar raised goes to research.

She’s humbled by the public’s generosity, but also overwhelmed by how far is left to go. Tens of millions are needed if change is to happen in time for her. But as Jane says, “How can I do nothing? Knowing that in 10, 20, 30 years time, women will continue to die in droves without research. You just have to try.”

We’re in awe of everything Jane is doing while living with this awful cancer. It’s heartbreaking but her example pushes us to do better every day.

As a family we are committed to helping in every way we can. We’ve funded three research projects in the US and NZ and continue to do what we can. But this problem is too big for one family to solve without help.

This is why we’re going public. Because our daughter,  and all the other women with this dreadful disease,  need your support.

Our message to you is simple. Please donate, please fundraise and please tell everyone you know about our incredible girl and this horrible cancer. Women’s lives are on the line.

Learn more: cureourovariancancer.org

Follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com


Maya muses

December 29, 2019


What gives life meaning

December 8, 2019

A heartwarming thread from Dr Alastair McAlpine:

 

Hat tip: Ned Hardy


Thanks IHC

October 30, 2019

People with intellectual disabilities and their parents owe gratitude to IHC which has just turned  70:

On 25 October 1949, 22 parents met in Wellington. A notice had been placed in the Evening Post the previous day calling for ‘parents and guardians of backward children in the Wellington district… to attend a meeting … to consider the formation of a parents’ association’. 

The meeting elected Hal Anyon as interim president and his wife Margaret Anyon as secretary/treasurer, plus two committee members. At the following meeting, on 23 November, 50 people formed the Intellectually Handicapped Children’s Parents’ Association. Within three years there were a thousand members in several branches around New Zealand. In 1994, following several name changes, the large nationwide organisation became the IHC.

Those founding parents were brave and stroppy. They had to be. In 1949 there was widespread discrimination against people with what was then called intellectual or mental handicap. This situation was a legacy of decades of eugenic assumptions in which disabled people, particularly those with intellectual or learning disability, were considered defective and likely also deviant. Widespread assumptions of ‘tainted heredity’ and shame meant parents were strongly advised to hide their disabled children away from families and communities in institutions and forget about them. Many mothers were powerless to fight the removal of their child in the face of state authorities. . .

Both our sons had brain disorders which left them with multiple disabilities.

Tom was only 20 weeks when he died. Dan survived five years without passing any developmental milestones.

Looking after him got harder as he grew physically without developing intellectually and IHC’s support was invaluable.

Just how good the organisation was, was summed up by the manager of the local branch when we were trying to work out what was best for Dan.

He said, “Let us know what you need and we’ll work out how to provide it.”

I served on the branch IHC committee for several years which increased my admiration for the work the organisation does in supporting and advocating for the intellectually disabled and its members.

They continue to face challenges, one of which has resulted in a mother taking the government to court to prove her disabled son isn’t her employer:

An independent disability advocate has filed papers asking the Employment Court to decide if people with intellectual disabilities have the mental capacity to be employers.

The government is promising to change this, but advocate Jane Carrigan doesn’t want to wait and is going to court. . .

In order to get funding, Ms Fleming has to be an employee of her disabled son, a relationship the Ministry of Health has already admitted is a mere fiction.

Independent disability advocate Jane Carrigan said for too long the ministers and their ministries have indulged in what she calls tricky and technical conduct, by creating sham employment relationships.

And in doing so, the ministers had removed themselves from their responsibilities under the New Zealand Public Health and Disability Act, she said.

“This allows the ministry to step back in the very cynical name of choice and control and say to people with disabilities – the majority of whom I might add have an intellectual disability – ‘well there you go, you’re the employer, you have the choice to employ who you want, the control to manage how your employment relationship works’.”

Ms Carrigan said that was ludicrous.

“The so-called employer is usually lying in bed with nappies on and has no capacity to manage the employment relationship intellectually. And even those people who are only physically disabled, many of them, because they are high/very high needs, will rely on a family member to do all the employment relationship stuff,” Ms Carrigan said.

Ms Carrigan said if there was an employment relationship it was between the carer and the Ministry of Health and she wanted the court to say so. . .

Thanks to those brave and stroppy parents who formed it, IHC’s advocacy has resulted in a lot of improvements to care and support for intellectually disabled people and their families in the last 70 years.

I am very grateful for the help it gave us and also aware of the help others still need and the battles still to fight.


Higher expectations of husbands than fathers

September 2, 2019

Jim Rose has a post at Utopia on research by Kathryn Edin showing women are choosier about their husbands than the fathers of their children:

Far from eschwing marriage as an institution, she found poor women idealised it to such an extent that it became unattainable. they didn’t believe that a marriage born in poverty could survive.

In a society that increasingly saw marriage as a choice, not a requirement, low-income women were embracing the same preconditions as middle-class women. They wanted to be ‘set’ before marrying, with economic independence to ensure a more equitable partnership and a fallback should things go bad. They also wanted men who were were mature, stable and who had mortgages and other signs of adulthood, no just jobs.

“People were embracing higher and higher standards for marriage,” edin explains. From a financial standpoint alone, “the men that would have been marriageable [in the 1950s] are no longer marriageable now. That’s a cultural change.” The low-income women in Edin’s study reported that decent, trustworthy, available men were in short supply in their communities, where there were often major sex imbalances thanks to high incarceration rates. This, Edin found, was why low-income women were willing to decouple childbearing from marriage: They believed if they waited until everything was perfect, they might never have children. And children, says Edin, “are the things in life you can’t live without.” As one subject explained, “I don’t wanna big trail of divorce, you know. I’d rather say, ‘Yes I had my kids out of wedlock’ than say ‘I married this idiot’. It’s like a pride thing.”

Marriage was so taboo among her subjects that Edin discovered two couples in her sample who claimed they were unmarried at the time of their babies’ birth but were actually not. One of the women had even been chewed out by her grandmother for marrying the father of one of her children.

The research centred on low-income women but this mindset can also be found among women with more means.

I can understand the strong desire to have children but how sad is it that the standards women set for fathers of their children are lower than those they expect in husbands; that men are acceptable as sperm donors but not to play the important parenting role in their children’s lives?

Women don’t want to marry ‘this idiot’ but they accept them to father their children.

Marriage used to be the institution that provided stability and security for families, for better for worse, for richer, for poorer . . .   now it’s an optional extra if an ideal man can be found and fathers don’t matter much.


Maya Muses

September 1, 2019


Unintentional balance

August 6, 2019

When I saw this on Twitter on Sunday I wondered how long it would be before someone took it down.

I took a screen shot and when I checked back shortly afterwards the tweet had gone. It was replaced by another with a photo of Justice Minister Andrew Little who is introducing legislation legalising abortions.

No doubt someone realised this photo was an inappropriate one to accompany such a story.

But it, unintentionally, gave a little balance to the debate by illustrating the intellectual inconsistency of one of the pro-abortion arguments – that it’s just a bunch of cells, a fetus, not a baby.

How can it be a baby when, as the photo shows, it’s wanted and loved but not a baby when it’s not; a baby if it is lost in a miscarriage and that is a reason for deep grief, but not a baby when it’s an abortion; or a painful experience when a baby dies in utero and a simple medical procedure getting rid of some cells when it’s aborted?

It can’t but we’re unlikely to see much if any discussion of this in the media, if coverage since the news broke is anything to go by. Everything I’ve read or heard so far accepts a woman’s right to choice with no consideration of a baby’s right to life.

There is an irony that Newshub’s exclusive breaking of the news showed some balance, albeit unintentionally, with that photo because as Karl du Fresne points out  anyone looking for it in coverage of the debate shouldn’t hold their breath :

. . . As the abortion debate heats up, we can expect to see many more examples of advocacy journalism for the pro-abortion case. Overwhelmingly, the default position in media coverage is that the abortion laws are repressive and archaic and that reform is not only overdue but urgent.

But at times like this the public more than ever look to the media for impartial coverage. Is it too much to expect that journalists set aside their personal views and concentrate instead on giving people the information they need to properly weigh the conflicting arguments and form their own conclusions?

That accidental photo could well be as close as much of the coverage  gets to impartiality and balance on this issue.


How old’s old enough?

August 1, 2019

Coroner Tim Scott said that a six year-old should not have been walking to and from school by herself:

Carla Neems was five weeks’ shy of her seventh birthday when she was fatally struck by a rubbish truck outside her Gisborne home on May 2, 2017.

In findings released on Wednesday, Coroner Tim Scott said it was “unacceptable” for Carla’s parents to allow her to walk to and from school with her older siblings, and children her age should be accompanied by an adult. . . 

Coroners have a job to do which includes making recommendations that might prevent future fatalities but there is no such thing as completely safe and blaming her parents for Carla’s death is heartless and wrong.

If six, nearly seven is too young, how old id old enough for children to walk a few hundred metres without an adult in tow?

This was a tragic accident which Carla’s family, their friends and the truck driver will carry for the rest of their lives but it should not be used to further curtail children’s incidental exercise and freedom.

If children can’t walk safely to school, address what makes it dangerous, don’t blame parents and provide yet more reasons for children to be mollycoddled.


That’s not how not to be a dickhead parent

June 21, 2019

Kate Forster gives her guide on how to not be a dickhead parent:

  1. Don’t be a Tiger Parent. Don’t demand they practise until they hate the thing they’re learning. Just because you didn’t get to learn the violin doesn’t mean they want to. They will hate it and you in equal parts in the future and hold it against you. Start saving for therapy now if you continue this.
  2. Don’t push them at school. Get them to pass and teach work ethic. My kid just passed her final year but focussed on her passions. She is now going to graduate with a double degree and is starting her Masters in what she loved since she was small.
  3. Don’t go away on holidays and leave them behind. They remember. This will come up in therapy. It’s called abandonment and it’s gonna bite you in the bum one day, hard. Real hard. Keep adding to the therapy fund if you keep doing this too often.

I’m not so sure about number 3 – most parents were couples before they were parents and there’s nothing wrong with a little time away without children providing they are well looked after in your absence and you also have holidays with children.

4. Don’t lecture your kids about not drinking when you drink every night in front of them.

Children learn more from watching what you do than listening to what you say.

But it was #5 to which I said a vehement no:

5. Don’t tell your kids to not try drugs. They will. You can’t stop them. Educate them about safe choices instead.

Taking it for granted your children will do something that is illegal, harmful, even potentially life destroying; and that could restrict career and travel choices, isn’t how not to be a dickhead parent.

Not all young people will take drugs. The best way to ensure they don’t is by your own example and by ensuring they know the dangers and consequences of taking illegal drugs and that they have the skills and confidence to make the right choices before they need to.

There is no 100% safe choice when it comes to taking drugs and a parent who lets their children think there is, is letting them down.


Lumsden maternity crisis

May 29, 2019

Three day stay

May 13, 2019

National MP Louise Upston has a Member’s Bill to support new mothers:

The first few days after giving birth are some of the most important, but can also be the most challenging for new mums.

“National is proposing that new mums should be entitled to three days of care after giving birth, and that support should be available after each child.

“At the moment, new mothers have 48 hours of care funded by DHBs, but we know that they’re often encouraged to leave as soon as possible. This sort of pressure can cause additional stress in what is already a stressful time.

Many aren’t just encouraged to leave, they’re told they have to leave and often just an hour or so after their baby is delivered.

That’s not always optimal for those with support from husbands, wider family and/or friends at home and it can be difficult at best for those without support.

During the first few days after birth we know mothers can experience the baby blues, have difficulty breast feeding, can be exhausted and sometimes just need a bit of extra help while they build up confidence.

“We believe mums should have a choice in the kind of care that they opt for, whether that’s in a hospital or at a community or private facility. We would make community care available to all women, no matter where they choose to give birth.

“This policy will cost an additional $16-$20 million. It would also be ring-fenced, meaning if one mother only requires one day in care, her additional two days would be used for another mum who might need a five day stay and the money can’t be put into other areas by DHBs.

Not all mothers will need or choose to stay for three days, some will need more. Ring fencing will give birthing centres the funds to provide that extra care when it’s needed.

“National believes the first thousand days are the most important in a child’s life. We will do all that we can so kids get off to a good start and make sure their parents are supported.”

National went into the 2008 election with a promise to fund maternity services to allow mothers to stay in birthing centres until breast feeding was established should they choose to.

It came from a policy I’d pitched at the party’s Southern regional conference that was received so enthusiastically I was asked to present it to the national conference.

When I got down from the stage Nick Smith told me that sometimes good policy is bad politics and bad policy is good politics but this was good policy and good politics.

National did provide funding for the policy in its first Budget after the 2008 election but sometime between then and now the funding evaporated.

I’m delighted that this Bill will, if it’s passed, reinstate the funding.

The science is clear, breastfeeding is best for mothers and babies, if mothers are willing and able to do it.

The willingness and ability are much more likely in a birthing centre with professional help on-hand than at home with limited if any assistance.

An extra day or two of postnatal care could make a huge difference to the mental and physical health of the mother and consequently the wellbeing of the baby.


You know you’ve got a country mum if . . .

May 12, 2019

Ashley Walmsley pays tribute to country mums in Queensland Country Life:

MUMS – what a great invention.

There’s nothing they can’t do.

Country mums, the ones in regional and rural areas, seem to be able to do all that and a bit more again.

From the paddock to the pantry, the school run to the shearing shed, the tuckshop to the tractor, the saleyards to swimming lessons: country mums are as adaptable as they are knowledgeable. . . .

Some, like 22: She’s used the shovel more for dealing with snakes than pottering in the garden don’t apply in New Zealand. Could you add some that do?


Children Are Like Kites

May 12, 2019

A thought for Mother’s Day:

Children Are Like Kites – Erma Bombeck

You spend a lifetime trying to get them off the ground.
You run with them until you’re both breathless. 
They crash.
They hit the rooftop.
You patch and comfort, adjust and teach them.

Finally they are airborne…
They need more string and you keep letting it out.
But with each twist of the ball of twine, 
there is a sadness that goes with joy.
The kite becomes more distant, 
and you know it won’t be long
before that beautiful creature will snap the lifeline that binds you two together
and will soar as it is meant to soar, free and alone.
Only then do you know that you did your job. 


Sunday soapbox

May 12, 2019

Sunday’s soapbox is yours to use as you will – within the bounds of decency and absence of defamation. You’re welcome to look back or forward, discuss issues of the moment, to pontificate, ponder or point us to something of interest, to educate, elucidate or entertain, amuse, bemuse or simply muse, but not abuse.

Image result for erma bombeck quotes mother

It is not until you become a mother that your judgement slowly turns to compassion and understanding – Erma Bombeck

 


Maya muses

May 8, 2019


Don’t let them drown

April 20, 2019

Ashburton District Council, Water Safety New Zealand irrigation companies, MHV Water, Barrhill Chertsey Irrigation, and Ashburton Lyndhurst Irrigation, are pushing the importance of adult supervision around water.

. . . In the last 10 years, there have been 58 preventable toddler drownings in New Zealand. As a vibrant farming community, the Ashburton District has many water races, irrigation ponds, streams and rivers, most of which are not fenced or restricted, and many are often on private properties. These waterways can pose a deadly threat to unattended children,” Ashburton District Council Chief Executive, Hamish Riach explained.

“It is not realistic to expect every waterway in rural areas to be fenced. With so many potential drowning hazards around, it is vital that everyone is keeping a vigilant eye on their young ones at all times. The Council is proud to be working in partnership with local irrigation companies and Water Safety NZ to help reinforce this crucial message.” . . 

One of our staff rang a few years ago to say his pre-school daughter was missing.

The house was fenced and gated but if she had managed to get past those barriers there were troughs and an effluent pond nearby which could have claimed her life.

Eight of us began searching and were on the verge of calling emergency services when the child’s sister found her, curled up in the bottom of her (the sister’s) bed.

That story had a happy ending, too many do not.

 


Pathways to farm succession

September 15, 2018

Any business succession can pose challenges.

With farming, where the business is also the home it can be particularly problematic.

The Red Meat Profit Partnership (RMPP) shows how it could be done:


365 days of gratitude

August 1, 2018

Soup is a lot like a family. Each ingredient enhances the others; each batch has its own characteristics; and it needs time to simmer to reach full flavour. Marge Kennedy

Today I’m grateful for family and soup.


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