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
Jane’s personal blog is janehascancer.com
A heartwarming thread from Dr Alastair McAlpine:
Hat tip: Ned Hardy
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.
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.