The story of one mans pregnancy: It felt joyous, amazing and brilliant

Pregnancy is increasingly common among trans men. For Jason Barker, who has made a film about the experience, it changed his life

Its hard to perform a somersault at 36 weeks pregnant. Towards the end of his debut feature film, Jason Barker is swimming in the London Fields lido in east London, a short walk from the flat he shares with his partner, Tracey. The screen is rinsed blue. Barker dances, makes a star. And then, very slowly, he turns full height in the water, his Hawaiian swim shorts flapping, his stomach a perfect, firm dome.

This is the viewers first sight of Barkers pregnant belly in A Deal With the Universe, which premieres at the BFI Flare festival next week. And after seven years in which he and Tracey tried to conceive, it is a moment of pure levity and joy. That swimming stuff that you see? he says. It felt like the first time I could ever say, Yeah! I actually like this body. Love it. Its brilliant.

Barker was born female. He transitioned roughly 20 years ago, at 26, soon after he met Tracey though, as Barker says, before and after dont really work in this story. The process of transitioning was gradual, without hard edges. The two of them hoped to start a family, but after a few years of Tracey trying to conceive with her own eggs, in 2003 they resorted to plan B. Tracey would be impregnated; Barker, who had undergone chest surgery but kept his ovaries, would supply the eggs. He bought a new camera to document it. Soon they would have a baby and a film.

So Barker stopped taking testosterone. He delayed an appointment to discuss a hysterectomy. Well, it was just a short film. Not too disruptive. But the filming went on and on and Barker ended up telling a very different story to the one he planned. The pregnancy he chronicled was not Traceys, but his own. And it changed his sense of who he was.

Pregnancy among transgender men is increasingly common. Sally Hines, a professor at the University of Leeds who is leading a three-year research project into the subject, says: In the UK, if you look at how many people are accessing blogs and online forums and support groups, asking about healthcare because they are pregnant, or young guys thinking about the future There is lots of anecdotal evidence that more people are doing it. When something becomes visible, more people think its possible.

But 10 years after Thomas Beatie, from Hawaii, made headlines with his combination of beard and baby bump the first publicised case of a legal male, in a traditional marriage to a woman, to give birth the data remains scant. In Australia, 54 people who identified as men gave birth in 2014, according to Medicare statistics. In the UK, the Office for National Statistics collects no information on the gender of the birthing parent; neither does the NHS. Last year, British newspapers including the Sun and the Independent hailed Hayden Cross as Britains first pregnant man. Soon afterwards, they had to hail another man, Scott Parker, after he got in touch to say that he had given birth a few months earlier.

There have been about six first pregnant men, Barker notes wryly. His son turns eight this year.

And yet the idea of transmasculine pregnancy as a novelty holds sway. Each birth is greeted as the first. It is perennially surprising, and I wonder if this is because it is conceived by cis people as a double-edged contradiction that undermines both the common conception of pregnancy as inherently female and the sense of a completed transition as if a trans man carrying a child constitutes a sort of U-turn. But, as Hines says, Transition is not a straightforward A to B Pregnancy is not an interruption, just another part of a long and complex journey.

Barker,
Barker, whose son is now seven. Photograph: David Levene for the Guardian

Barkers film begins with him prizing a state of heightened masculinity. When Tracey cant conceive, he longs for a penis and testicles. He strikes muscular poses while washing the windows of their caravan, and the thought of his eggs entering her makes him feel like cock of the walk. He says it in a way that emphasises the pun. But, as the film progresses, a subtler story emerges.

I had this fantasy picture, he says. I thought, Ill have a baby, and that night Ill go and have a pint, and about two weeks after that Ill start on the testosterone again Job done. Pregnancy was a transient state, a strange bit of my life, after which normality would be restored.

But, pretty quickly, the film begins to transmit more mixed messages. As soon as he is pregnant, Jason appears in a pair of denim dungarees, that classic of 1970s maternitywear. In labour, he looks forlorn in a cerise nightie with a cute animal motif. He laughs when I ask why, in pregnancy, he resorted to these conventional cues for femininity. You just grow so massive and youve got nothing! he says. Retailers of pregnancy clothing arent exactly teeming with options for trans men. Tracey went to New Look and bought a load of maternity trousers, but even the combats were embroidered with flowers. She had to get a needle and unpick them.

In pregnancy, Barker mostly passed as a fat bloke. No one offered him a seat on the bus. No one batted an eyelid when, dressed in jeans and a cardie, he walked along the canal towpath to Nandos two days before giving birth. He was both in plain sight and, owing to the relative rarity of pregnant men, hidden. In an antenatal class, when the teacher instructed all the pregnant folks to feel their hips, and he obeyed, the man beside him gave a nudge and said: I dont think we have to bother, mate!

For as long as he could remember, Barker had had a body that didnt fit. And now youre here, he tells his son in the film, and I cant think like that any more.

It would be easy to imagine pregnancy as a time of heightened gender dysphoria for trans men. I had expected most people to have more dissonance with their body during pregnancy, says Alexis Hoffkling, a researcher and medical student at the University of California, San Francisco who is trans herself. A few years ago, she started interviewing trans men who had been pregnant and found that while some had a lot harder time with their bodies [others] felt empowered. Some found it masculinising. They were more like a fat dude than they had ever felt before. As their body got bigger, they felt stronger.

When Barker began to piece together the 25 hours of tape he had recorded over eight years of trying to start a family, a worry began to form. The proper story, he thought, would be that somebody keeps their gender identity regardless. Im a man and Im pregnant but Im still a man, and this is a mans pregnant tummy. But for me, it felt really different.

Barker says he is naturally a very binary person. Ive been ever so serious about gender in my life. That its this thing you have to be fully committed to. Because my generation of trans people had to be fully committed in order to access treatment. It took a while, but slowly he began to let go of his self-interrogation, what he calls the whole pregnant man thing. He stops to think. The closest comparison, he says, is that being pregnant was like watching Mo Farah run. He is so graceful. Hes not having to go, Im trying to run! like the rest of us. And thats how it felt for me: Wow. Im just doing this. It felt joyous and amazing and brilliant.

In the same way that Barker would always stand up for his friends against transphobic strangers, now he felt compelled to protect his pregnant body against his own sense of incongruence. I would defend that body. That body is a beautiful thing because of what its doing and what its done, he says. The body was all about my kid.

So, in a way, it was a selfless body? It didnt feel right when Barker was its sole occupant, but when it acquired another, an other, it became a better fit? I wonder if Barker felt less male when pregnant. But he says only: Honestly, I had a really lovely time.

Im going to ask you a very personal question, he says, leaning forward. When people talk about getting broody again, its pretty ick, isnt it? Its icky because none of us likes to think we are ruled by our hormones?

Thats true, I say. But, speaking personally, I did get broody again.

Yes, so did I! he exclaims, delighted. He and Tracey knew that they wouldnt try for another child, because it had taken them a decade to conceive and they didnt want to lose their sons infancy in endless rounds of IVF. But for a long time after the birth, Barker lived with a sort of second, shadow baby.

Id have these fantasies that somehow, a few months later, theyd say, Just a minute! We think theres a twin in there! Id think about it all the time, that I was somehow accidentally pregnant and nobody knew. Kangaroos do it, Id think. Would there possibly be a way? Theyd say, We dont know how its happened but its like your body stored it. And Id be, Well, there you go! A miracle!, he says.

He never had the hysterectomy. He hasnt taken testosterone in 15 years, since he and Tracey embarked on their plan B.

Barker
Barker and his partner Tracey. Photograph: Sara Davidmann/A Deal With the Universe/BFI

There is, as yet, no guidebook to pregnancy for trans men, though Barkers film will fortify others who wish to follow in his footsteps. There is a memoir, Wheres the Mother? Stories from a Transgender Dad, by Trevor MacDonald, who lives in Manitoba, Canada, and who carried his own children, now three and seven. MacDonald founded a Facebook group on birthing and breast- or chestfeeding for men.

The questions that come up repeatedly are practical ones. What is the impact of testosterone on a trans mans chances of conceiving? (Barker took it for three years.) How does chest surgery affect lactation? (This subject is off-limits for Barker, but MacDonald fed his own children and became the first openly trans volunteer at La Leche League, the breastfeeding support group, after they initially told him it was inappropriate for them to help him. From his own research conversations with trans men, he knows that some found nursing reduced their experience of gender dysphoria around their breasts: It seemed to have to do with those body parts serving a purpose that they otherwise didnt, he says.)

Once, in hospital, the nurses called Barker Mum. But after racking his brains, that is the single misstep he can recall. MacDonald says he is amazed that Barker had such a smooth experience with his healthcare providers. There are plenty of stories of those who dont specimen bottles routinely given to thin female partners instead of the pregnant man, and so on.

Registering the birth was a hurdle, though. Barker had no choice but to officially be his sons mother. As well as his name, he included his birth name under the designation AKA, because he dreaded some kind of clerical error that would make the baby not mine. That sounds completely paranoid, he says, but growing up with section 28 had given him the idea of not thinking that you deserve to be spoken about, do certain jobs or have certain things. And those things included, presumably, a child.

Mostly, though, parenthood has been free of administrative challenges. In fact, Being out and about as a dad with a small baby attracted more attention than being a pregnant man did! he says. Barker is a writer, but he is also his sons prime carer. I remember him crying on a bus and a woman shouted, Not as easy as you thought, was it? Also I once shocked the whole Stay and Play when I told them that my partner had gone back to work two weeks after the baby was born.

Their little boy has grown up with an understanding of his family, how he came about. Ever since he was born, they have told it to him almost like a bedtime story. (He has heard it so often, he sometimes rebukes his dad for boasting about being trans.) Discussing Harry Potter one day, Barkers son wanted to know which of the characters Barker would be if he could choose anyone. Hagrid, Barker replied. In the films, the hirsute, giant gamekeeper is played by Robbie Coltrane. Well, youve already got the beard, his son said, appreciatively.

A film needs an arc, of course to end somewhere other than where it started. Barkers worry about this, when he began to edit the footage last year, was, My God, will somebody think Im cured [of being trans]? Its a horrible thought, he says. Its all right for Tracey, his indomitable partner, whose eyes continue to sparkle even through a mastectomy for breast cancer. She didnt need an arc. She could just be brilliant all the way.

I think my arc, he says, is going from somebody who thinks being an ordinary man is the best thing you can be to somebody who sees a different way of being. To a certain extent its about femininity, he says, tapping the table as if hes put his finger on it. Id pushed [it] away from a really young age, and I think its about bringing some of that back. And you realise how undervalued this work is And it does make you think, What was I pushing away? What was I scared of?

Its about vulnerability, I think, he says, and it is a surprise to hear him say it, because the quality he most wants to surface in the film is resilience. Of course, the two go together, and Barkers story is about both of those things, and the personal regrowth that can come from giving birth. He not only challenged boundaries in the world around him, but in his own understanding of himself.

A Deal with the Universe is at BFI Flare: London LGBTQ+ film festival on 26 March at BFI Southbank

Read more: https://www.theguardian.com/lifeandstyle/2018/mar/22/story-one-mans-pregnancy-trans-jason-barker

Cancer I could deal with. Losing my breast I could not

When Joanna Moorhead found out she had breast cancer, a mastectomy seemed the best option. So why did she pull out of the operation at the last minute?

Cancer I could deal with. Losing my breast I could not

When Joanna Moorhead found out she had breast cancer, a mastectomy seemed the best option. So why did she pull out of the operation at the last minute?

Read more: https://www.theguardian.com/society/2018/feb/04/cancer-mastectomy-losing-breast-joanna-moorhead

Warnings over shock dementia revelations from ancestry DNA tests

Companies have been told to accept moral responsibility and provide counselling for people who inadvertently discover health risks

People who use genetic tests to trace their ancestry only to discover that they are at risk of succumbing to an incurable illness are being left to suffer serious psychological problems. Dementia researchers say the problem is particularly acute for those found to be at risk of Alzheimers disease, which has no cure or effective treatment. Yet these people are stumbling upon their status inadvertently after trying to find their Viking, Asian or ancient Greek roots.

These tests have the potential to cause great distress, said Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge. Companies should make counselling available, before and after people take tests. The issue is raised in a paper by Middleton and others in the journal Future Medicine.

A similar warning was sounded by Louise Walker, research officer at the Alzheimers Society. Everyone has a right to know about their risk if they want to, but these companies have a moral responsibility to make sure people understand the meaning and consequences of this information. Anyone considering getting genetic test results should do so with their eyes open.

Alzheimers is linked to the build-up in the brain of clumps of a protein called amyloid. This triggers severe memory loss, confusion and disorientation. One gene, known as ApoE, affects this process and exists in three variants: E2, E3 and E4. Those possessing the last of these face an increased chance of getting the disease in late life.

About 3% of the population has two copies of the E4 variant one inherited from each parent, Professor John Hardy, of University College London, said. They have about an 80% chance of getting Alzheimers by the age of 80. The average person has a 10% risk.

The link with ApoE was made in 1996 and Hardy recalled the reaction in his laboratory. We went around testing ourselves to see which variant we possessed. I found I have two low-risk E3 versions on my genome. But if I had found two E4 versions? By now, having reached my 60s, I would be facing the prospect that I had a serious chance of getting Alzheimers disease in 10 years. I would be pretty fed up.

The ability to find a persons ApoE status has become even easier as a result of the development of genetic tests that provide information about a persons ancestry, health risks and general traits. Dozens of companies offer such services and adverts portray happy individuals learning about their roots 43% African or 51% Middle Eastern often to the sound of Julie Andrews singing Getting to Know You or a similarly happy-sounding track. All you have to do is provide a sample of spittle.

The resulting information about predilections to disease is not stressed but it is given. Kelly Boughtflower, from London, took a gene test with the company 23andMe because she wanted to prove her mothers family came from Spain. The results provided no evidence of her Iberian roots but revealed she carried one E4 version of the ApoE gene, which increases her chances of getting Alzheimers, though not as drastically as a double dose.

I didnt think about it at the time, said Boughtflower. Then, when I took up work as an Alzheimers Society support worker, I learned about ApoE4 and the information has come to sit very heavily with me. Did I inherit the ApoE4 from my mother? Is she going to get Alzheimers very soon? Have I passed it on to my daughter? I have tried to get counselling on the NHS but that is not available for a person in my particular predicament, I was told.

Other examples appear on the ApoE4 Info site, a forum for those whose gene tests show an Alzheimers susceptibility. Have stumbled upon my 4/4 ApoE status. Im still in shock, writes one. Another states: I got paid a $50 Amazon gift-card to take part in a genetic study. I was naive and unprepared.

There is no drug or treatment for Alzheimers and although doctors advise that having a healthy lifestyle will help, the baseline risk for E4 carriers remains high. That is a real problem, said Middleton. Genetic test companies say they offer advice about counselling but that usually turns out to be a YouTube video outlining your risks. Affected people needed one-to-one counselling.

For their part, gene test companies say results about Alzheimers and other such as breast cancer and Parkinsons are often hidden behind electronic locks. A person has to answer several questions to show they really want to open these and is informed of potential risks. But Middleton dismissed these precautions. You know there is medical information about you online and so you will go and find it. It is human nature.

Margaret McCartney, a GP and author of The Patient Paradox, agreed. What worries me is the aggressive way these tests are marketed. People are told all the benefits but there is no mention of the downsides. The NHS is expected to mop these up.

Meanwhile, the gene test company has made its profit and walks away from the mess they have created. I think that is immoral. They should be made to pay for counselling for their customers.

Read more: https://www.theguardian.com/science/2017/aug/26/alzheimers-disease-shock-for-genetic-ancestry-hunters

Creative dad displays love of his sons proudly with ‘Calvin and Hobbes’-themed tattoo

If you’ve ever talked to your friends about getting a tattoo, the one thing they’ll probably tell you is to make sure the tattoo is something meaningful.

For Douglas Pratt, father of two, that something meaningful comes in the form of his sons. That’s why for his first tattoo, Pratt got an image of him and his two sons sharing a happy moment in the style of Calvin and Hobbes.

The adorable tattoo received a lot of attention on Reddit and Imgur after Platt shared the image of it, and we can see why.

In the comments on his Reddit post, Platt shared the reason behind the Calvin and Hobbes stylization.

“I grew up reading the comic strip with my dad. It was one of the first things that we really connected on,” Platt said. “It is just something that I wanted to share with my boys. Also, the artwork is great in those comics.”

The tattoo was done at Novellus Studios in College Station, Texas, by artist Jason Calvin. Platt stated that the tattoo was done in one three-hour session.

Unsurprisingly, many who saw the picture were curious about why one of the boys was dressed in a little animal costume. Some also pointed out that the little boy was missing a left hand.

“My oldest son is constantly in either footie pajamas or a costume of some kind. One of his favorite costumes is a fox costume. So he’s in a fox costume,” Platt explained in a Reddit comment.

As for the hand, Platt shared in another comment, “My oldest was born without a left hand so that was on purpose.”

What an absolutely perfect way to commemorate a beautiful family.

WATCH: These tattoos conduct electricity, turning you into a very basic cyborg

Read more: http://mashable.com/2017/03/24/calvin-and-hobbes-dad-tattoo/

How breast cancer and the BRCA gene brought us the sister we never knew

For Tamsin and Lorna, discovering their half-sister was good news at a time of gruelling treatments and agonising choices over preventive surgery

Like all sisters, Tamsin and Lorna Sargeant and Claire Pike are linked by their genes. But in their case, one gene has dominated their relationship; in fact, it was responsible for bringing them together for the very first time. In this picture of the three of them smiling in the sunshine they look happy and carefree but the gene that brought them together has led to a huge amount of heartache, and desperately difficult decisions.

The story that united these sisters begins one day in spring 2009, when Tamsin, then 40, noticed a strange thickening under the skin of her chest, just below her collarbone. She went to her GP, who knew immediately it was serious. Sure enough, tests revealed a large tumour that had spread to her lymph nodes.

It was shocking and scary: but Tamsin knew she would get through. Her sister Lorna was a big support: the two had been raised by their mother, Jennie, and stepfather, Ralph, who had died a few months before her cancer came to light.

Tamsin had chemotherapy to shrink the tumour, followed by a lumpectomy and radiotherapy. She carried on with her job as a social worker as much as possible as well as caring for her then two-year-old daughter, Esm, with her partner, Tom. By early 2010, it seemed she had put breast cancer behind her and moved on with her life.

But she hadnt. At some point, her oncologist raised the possibility of whether Tamsin might be a carrier of one of the most common breast cancer genes, BRCA1 or BRCA2. We had always been a bit worried about breast cancer in our family, on my mums side, because my grandmother and an aunt had it. But from the pattern of the disease in our family, the doctor said it was unlikely the BRCA gene was in our family.

All the same, Tamsin agreed to take part in some medical research that meant being tested for BRCA. She was asked to fill in a detailed questionnaire about her family history, which meant contacting someone she had barely seen since she was a small child: her birth father, Clive, who had split up with her mother when she and Lorna were very young. I hardly remembered Clive, and Id always regarded Ralph as my dad, says Tamsin. But I had Clives email address, so I wrote to him to ask for information about anyone on his side of the family who had had breast cancer.

Clives reply contained a bombshell. Not only had his sister and other members of his family had breast cancer, but he had another female relative to tell Tamsin about: a half-sister she had not known existed Claire, the daughter of another relationship.

The news was exciting, and unexpected, and Tamsin hoped they might get to know one another. But first, she felt she needed to rule out the possibility, however unlikely her oncologist thought it was, that her family might be BRCA carriers. I was very interested in Claire, and keen to meet her, but I felt it was my responsibility, for her and for Lorna, to make absolutely sure I didnt have this gene, says Tamsin. Id been through a horrible experience, and I thought the least I could do for them was make sure it wasnt a big risk for them, too.

The test results took a long time, but Tamsin wasnt too worried. So when in March 2011 she went along to the Royal Marsden hospital to be told she was, after all, a carrier of BRCA1, the news was utterly devastating. It was worse than being told I had cancer in the first place. By this stage, my hair had grown back and I felt my life was back to normal: now I was told I had a 50:50 chance of getting breast cancer again, and that I should consider the possibility of having a double mastectomy to reduce the risk.

But on top of that, I now had to tell Claire and Lorna that they, too, might be carriers and then they, too, would be at high risk of breast cancer.

A BRCA gene mutation isnt the most common cause of breast cancer. According to Martin Ledwick of Cancer Research UK, fewer than one in 10 cases of the disease are linked to it. But where the gene is identified, theres a higher risk of getting breast cancer. Up to 65% of women who carry the BRCA1 gene, and 45% of women who carry the BRCA2 gene will develop breast cancer by the age of 70, he says. So while it doesnt mean cancer is a given, it does mean its worth considering preventive surgery a double mastectomy to reduce the risk of breast cancer, and an oophorectomy, to reduce the risk of ovarian cancer, which is also higher in BRCA carriers.

Although she knows it wasnt rational, and that she cant possibly be held responsible for it, Tamsin says she felt the weight of responsibility of having to tell her sisters about the gene. They had seen what Id gone through, and I knew they would now be thinking, will I have all those horrible experiences ahead of me, too? Like Tamsin, they had choices to make: and the first was whether to be tested for the gene.

Whats interesting in a family is that different people react totally differently to the same piece of news, says Tamsin. It wasnt just Lorna and Claire there were others affected, relatives on Clives side of the family and my mum and her relatives. Some people wanted to have the test so they knew one way or the other; others preferred to wait and see; others wanted to have surveillance so any tumour would be discovered as early as possible.

For Tamsin, there was a different dilemma. I had to think about whether to have a double mastectomy. At first, I was completely opposed to that: I really wanted to keep my breasts, they felt like such an important part of me. Also, Id had enough of hospitals and medical treatment.

Eventually, though, she decided to have the operation. Ive got a young child, and I thought I owed it to her and Tom to do everything I could to reduce my risk of a further cancer, she says.

When the operation took place, in February 2012, there was more bad news: Tamsin already had a second cancer in her other breast. More chemotherapy followed, as well as a failed reconstruction; and because the cancer had spread to her lymph nodes, these also had to be removed. Things seemed to go from bad to worse and all the time, I knew my sisters, as well as supporting me, were thinking this could be what lay ahead for them, says Tamsin.

After her double mastectomy in 2012, she had her ovaries removed the following year. But this is another operation you dont just walk away from there are big consequences to it. You go through an early menopause and its life-changing, she says. I like the fact that Angelina Jolie, who made the same choices as me, brought the BRCA gene to everyones attention, but I dont think the suffering that goes with it has been fully appreciated.

Meanwhile, first Claire, and then Lorna, had decided to be tested. For Claire, who is 37, it took a while for the enormity of the news that she might be affected by the BRCA gene to sink in. Id never met my birth father, Clive, but my mum had told me that somewhere out there I had two half-sisters, she says. And then one day Mum came round and said she needed to talk to me about something: Clive had contacted her about Tamsin having the gene. This was before Angelina Jolie, so I had no idea what it meant but I was worried.

My GP referred me to a geneticist, and after counselling I decided to have the test Ive got a young son, and felt I needed all the information I could get. Six weeks later, she got the news that she, too, was a carrier. By this stage, Tamsin had had her preventive surgery and found out she had cancer again so I decided it was too much of a risk not to have the operation. She had a double mastectomy and reconstruction in 2013, and has just had her ovaries removed.

Lorna, who is 45, was the last of the three sisters to be tested. Im the kind of person whos happy trundling along, so I thought I didnt want to know, she says. But after a couple of years I was worrying about every little bump and ailment and whether it was cancer.

She decided to have the test in March 2014. Ive never told my sisters this, but I was worried that I might be the only one of us who didnt have the gene. It sounds odd, but I thought Id feel guilty having to tell them I was BRCA-free. Sadly, she didnt have to: she, too, tested positive.

Id already decided to have the surgery, she says. I didnt want to live with this ticking time-bomb.

For all three sisters, being brought together has been a silver lining to the dark cloud of BRCA but they dont want to minimise that cloud, or what its meant to their lives. Its been a very tough journey, and although its been wonderful to get to know Claire, the impact of the gene has coloured everything, says Tamsin. Apart from anything, theres always been one or other or us going through major surgery.

Claire says having two new sisters has been a brilliant boon to her life. Lorna and I live quite near one another in Manchester and Cheshire, so its been great being able to meet up. When I was a teenager, I used to wonder about these sisters I knew nothing about, so its wonderful to have got to know them eventually. And given what weve had to face up to, its great that all of us know exactly what the others are going through weve always had someone to talk to who understands.

Lorna agrees: Weve had one another and been able to compare scars and nipples and lack of nipples, she says. My big hope now is that, at some point in the future, we can put BRCA into the box where it belongs, and just enjoy our lives together.

Tamsin, Claire and Lorna are supporting Cancer Research UKs Right Now campaign to beat cancer sooner. To support them, visit cruk.org

Read more: https://www.theguardian.com/lifeandstyle/2017/jan/28/breast-cancer-genetic-glitch-sister-treatments-brca-preventive-surgery

Facing my fear: to save my autistic son’s future, I had to let him go | Elayne Robertson Demby

Its always hard for parents when their children leave home. But usually they can fend for themselves when they do

Watching the child you once cradled in your arms walk out the door and into their own life always fills a parent with a sense of terror and loss. You raise them as best you can and hope that the adult you created will succeed.

When that child, however, will never truly be an adult in the typical sense of the word, its more complicated.

Over 21 years ago, I gave birth to a beautiful, blue-eyed baby boy. At first, all went well. Evan, my son, initially met all his developmental milestones. But then, at 18 months, I realized something was horribly wrong.

While other children babbled, Evan was strangely silent. While other children played with each other, Evan played by himself, endlessly rolling toy cars back and forth.

We started making the rounds to doctors, and, after many evaluations and tests, got the diagnosis. Evan was on the autistic spectrum. Initially we were told that it was doubtful he would speak, or be self-sufficient.

Despite the dire prognosis, I threw myself into curing my son. After years of therapists, and hard work, Evan had limited, basic speech, could dress and take care of his toileting needs.

Even with those gains, Evan never progressed mentally beyond toddlerhood. Physically, however, he continued to grow into an adult, eventually reaching 5ft10in. He weighs over 200 pounds.

I began worrying about his future early on. I couldnt expect him to grow up and support himself. I also couldnt expect him to live without someone caring for him. I initially thought that relatives who loved him would be able to care for him should my husband and I become sick or die.

After my husband returned from trip to Ireland when Evan was 15, however, we knew that was not the case. We had left Evan with my mother. Within a day she realized she was not up to the task of caring for the very large, 15-year-old toddler my son had become. Both of my sisters lived nearby, so every day they passed Evan between them, no one capable of caring for him for more than several hours at a time.

After we learned what happened, I knew other arrangements were needed for Evans future. I could not expect family members to take care of him he needed professionals. To be honest, I was not sure either my husband or I could do it on our own either. I became increasingly nervous about Evans future, and often found myself lying awake at night wondering what would become of him.

I threw myself into researching what the potential arrangements could be for an adult with autism and eventually realized that it would be best for him to go to a residential school out of state. We live in Connecticut, and if a child lives with his or her parents when they graduate from school at 21, then that child will not be eligible for an adult residential placement until there is an emergency (like both parents dying).

If a child like Evan was in an out-of-state residential school, however, they automatically qualify for residential funding from the state when they turn 21. I knew I had to send my child, who was still effectively a toddler, away for his own good. It was the hardest decision I ever made, and I had to convince my husband that it was the right one as well.

Even after we decided what to do, making it happen was not easy. For him to go to an out-of-state residential school meant I had to get our local school district to agree, since they would be the ones actually paying for it. At over $200,000 a year, it was not something the district wanted to do. We could not pay any of the cost, because that would disqualify Evan from receiving state funding when he turned 21. We commenced on a two-year legal battle with the school district.

In the course of all that, I was diagnosed with breast cancer and could not meet all of Evans needs when I myself was sick. My cancer was caught early, and my treatment was not overwhelmingly invasive, but it was enough to make me realize that I would not always be in perfect health. Evan needed the care of someone who was. I redoubled my efforts to place him in a residential out-of-state school, eventually gaining him a placement in New York when he was 17.

Evan, now 21, lives in a state-run group home 40 minutes away from our home. He has friends a social life with peers that are like him, something he did not have at home.

Most importantly, Evan is now somewhere that, should I die or become ill again, he will always be cared for. Giving up a child is the hardest thing for a mother to do, but it was the only way to ensure his future.

Read more: https://www.theguardian.com/commentisfree/2016/dec/02/autistic-son-let-him-go-facing-my-fear

Mums bucket list: Have a great time after Ive gone

When Kate Greene was dying, she left behind a list for her sons an eclectic mix of thoughts, reminders and life lessons. Now her moving story has been made into a film starring Emilia Fox and Rafe Spall. Tanith Carey meets her family

Kate Greene was always one of those people who made lists to organise her thoughts.

Even as a 16-year-old, she was already carefully writing out her requirements for a contract of mateship for her boyfriend, Singe.

Phone at least twice a day, she wrote out in fountain pen on a piece of A4 with red margins.

Flatter me. (Remember, flattering can get you everywhere), it went on.

Supply a flower once a week.

Complete fidelity. Soul ownership.

Take me out Saturday evenings.

Be loved and to love.

Tell no lies and give straight answers.

Organised, yet intimate, it says a lot about the passionate woman Kate was.

Yet its the list Kate wrote 20 years later, in the weeks before her death from breast cancer, which has left the lasting impression.

When Kate, an insurance underwriter, realised she was not going to see her two sons, then aged four and five, grow up, she wrote out the ways she hoped they would make the most of their lives whether it was to keep searching for four-leaf clovers, to rollerskate around museums or to grow up to treat women with respect.

When her list an eclectic mix of thoughts, reminders and life lessons was mentioned in her local newspaper obituary, the story was picked up and it became a bestselling book. Now, its been turned into a film, released this month, starring Emilia Fox as Kate and Rafe Spall as Singe.

Such a fanfare is likely to make such wish lists known as bucket lists an increasingly common part of bereavement.

Kate
Kate Greene with Singe and their children, Reef, four, right, and Finn, three. Photograph: Barry Gomer

But as death has to be looked at from two sides, from the point of view of the person leaving, and also from that of those left behind, how does Singe feel now, six years after his wifes death?

Has the existence of a weepie film about him and Kate held him back from moving on or helped him bring up two children on his own?

And is there a danger that, in death, Kate could come across as too saintly or Singe, very much the celebrity in his home town of Clevedon, Somerset, could be overly flattered by having their lives turned into a movie?

In the four hours I spend with Singe in a pub overlooking the sea, these worries dissipate. He has been through hell, yet embodies the seize-the-day spirit Kate wanted for him and their sons.

Beyond that, for many of those who have read the book, Singe represents the hope that there is life on the other side. But, Singe (short for St John), 50, a paramedic who now runs training courses for young people, says he never wanted Kate to make the list in the first place.

Watch the trailer for Mums List

When Kate was diagnosed with cancer, their elder son, Reef, was four and was still recovering from a rare and aggressive form of cancer rhabdoid soft tissue sarcoma which had wrapped itself around the femoral nerve in his leg.

While Reef had been seriously ill in hospital as a toddler, their younger son, Finn, had been born two months early when the stress of Reefs cancer treatment had kick-started Kates labour.

On the New Years Eve before Kate was diagnosed, Singe remembers taking a break from the vigil at Reefs hospital bedside. They stood in a high stairwell, watching fireworks exploding over Bristol below.

Kate turned to me and said: I would swap places with Reef in a heartbeat. The horrible irony is thats what happened.

After they thought Reef had beaten the astronomical odds against him surviving and walking again, Kate decided she wanted to give something back by donating blood because her son had received so many transfusions.

Instead, she was turned away for being anaemic. As she started to monitor her own health more closely, she discovered a lump in her left breast.

The two cancers were entirely unrelated. Reef had been given a 6% chance of survival, Kate 80%. But, aged 36, Kate had to face the worst news for herself.

Singe
Singe with Finn and Reef by Kates grave. Photograph: Adrian Sherratt for the Guardian

It was as if someone had said: Well let you have Reef, but you cant have both, says Singe. It felt like Reef had been returned to me and Kate was being taken instead.

After a year of treatment, Kates decline was fast. At Christmas 2009, she was given 18 months to live. She actually only had a month.

As she started to come to terms with the fact that she would never see her sons grow up, she started compiling her hopes for them in her diary and on scraps of paper.

Singe said: The first request came when she was home from hospital for a bit. By then, she was on oxygen to keep her lungs working. The boys were in bed and our plan was to cuddle up in front of the TV. I offered her a cup of tea and when I heard her call out to me in the kitchen, I thought she was going to say she wanted two sugars, instead of one, or something.

But she said: Singe, would you take the boys on holiday to Llantwit Major for me next summer if I dont make it? It was a beach where she had spent her holidays as a child.

I was like: Oh shut up, youll be fine. But she had clearly been thinking about it for a while because she then rattled off six more things, bang, bang, bang, like how she wanted me to take them diving to other places she had not yet been able to visit.

When Kate returned to hospital, she continued the list on Post-it notes and by text when her hands were too weak to write. Stupidly, I deleted some of the messages. Even in the last days, I wouldnt allow myself to believe she was leaving me. I wanted her to have a positive mindset because I thought that was the best way for her to beat the cancer.

Id get a message and think: Youll be here in the summer, silly bag. I got fed up because until the end I thought there would be a miracle drug that would come along and save her.

It was as she died in hospital in his arms that January that Singe started to understand. Her last word was: Sorry. She realised what a massive undertaking it would be for me to raise the boys without her.

The immediate aftermath of her death was shattering, says Singe. The only way to describe it is to imagine youre on a sunny beach one minute and the next the sky goes completely dark. Its like you are hit by a massive wave which completely trashes you and you cant breathe. You try to get to your feet, but you keep slipping under the waves.

As Singe found more scraps of paper and Post-it notes, he and Kates mother, Christine, typed out the full list. In the bleakest moments, requests such as to kiss each boy twice every night one from Singe and one from Kate gave him routine.

Singe
Singe with his sons at Clevedon beach, Somerset. Photograph: Adrian Sherratt for the Guardian

Other requests that they all go diving in the Red Sea, as she had done gave them something to plan and look forward to. Most selfless was Kates insistence that Singe find another woman to replace her. At first, it seemed an impossible task.

Since meeting at a rollerskating rink when she was 14, Kate and Singe were besotted. They married in 1996.

Both were adrenaline junkies who crisscrossed the world swimming with sharks, skiing off-piste and bungee-jumping off cliffs.

We were so in love, mates would say: For Gods sake, get a room. It was only after Kate died that I learned that not every husband loved his wife the way I did and back again.

Yet one of her texts to him from hospital read: Would be good if you settled down sooner rather than later so you get to see grandchildren. She floored me with that one.

I instantly dismissed it, but she followed it up with a couple of texts making sure that I understood she meant it. She wanted the boys to have a positive female influence.

In another painfully honest acknowledgement that life would move on without her, Kate gave permission for pictures of her to eventually be confined to the boys bedroom once Singe met a new partner.

That is now whats happened. Two years ago, Singe met someone, a single mother with a son about the boys age, and with a zest for life similar to Kates. They now live together as a family. Reef and Finn now call her Mum, too.

Although Singe has now crossed off most of the items on the list, there were some that were elusive and others that remain undone.

Kate was always on the lookout for four-leaf clovers. But despite planting genetically modified clover seed on Kates resting place, hoping she would give it a hand, he and the boys never found one until a friend discovered a patch and called them to come and pick some.

They still plant sunflowers every now and again, as Kate asked, celebrate birthdays big time, and eat orange Club biscuits because they were her favourites.

But day-to-day family life has also had to take priority over ticking off some of Kates more exciting requests, such as going to see the northern lights, or taking the boys to Switzerland, where Singe proposed to her.

As to where she is now, Singe and Kate both believe and believed that when you are gone, you are gone.

Even so, when the boys, now 10 and 12, see a crisscross of plane trails in the sky, they still like to think its a kiss from Kate.

When I ask Reef, a thoughtful, confident boy, what his mother wanted for him by writing the list, he replies without hesitation: Happiness.

He and his brother have seen the trailer, but not the film, which they will see when they are older.

So does Singe feel a responsibility to tick off whatever is left on the list?

Theres no pressure. The things on the list are what Kate and I both wanted to do and how we both wanted to live our lives. She may be gone, but the boys get bits of their mum by doing the things she enjoyed and what she loved to do. They know her better that way.

He admits he has sometimes wondered if she would have wanted so much focus on such personal thoughts recorded at such a desperate time of her life but overall, Singe believes she would have been proud of the life he has built for their sons.

Watch video of Singe Greene talking about Kate

Its like leaving footprints on a beach you walk up and the wave comes and the footprints are gone. This is a way to keep the footprints still there.

Having two happy, healthy children was Kates dream and thats what I have right now.

The little snippets about herself, the pointers for me and the instructions for the boys were all saying the same thing. Be happy, appreciate life and have lots of fun.

Between the lines, Kate was also saying, Dont forget me, but please move on. Make the most of every day, just as I did.

Mums List is in cinemas nationwide from 25 November.

Read more: https://www.theguardian.com/lifeandstyle/2016/nov/19/mums-list-film-kate-greene-bucket-list-family

My wife had cancer but my family didnt call or visit | Mariella Frostrup

A man says his mum and siblings did nothing while his wife had a masectomy and chemotherapy. Mariella Frostrup says he must demand answers

The dilemma In February my wife was diagnosed with breast cancer. It was devastating news for her and for me and our son. After chemotherapy, physiotherapy, radiotherapy and a mastectomy, she has now, thankfully, been given the all-clear. But my mother, brother and sister did nothing to help us in our darkest moments. Not one phone call or visit, nothing. All my life I have been there for my family, yet not once have they asked how we have coped. Admittedly, I have not explained to them how I feel as I want them to come forward of their own volition, so I know that they genuinely care. Also, in the past, they have made a huge fuss over minor things which I unnecessarily apologised for and I now realise I should have stood my ground better, as I perhaps looked weak. I have recently been admitted to A&E with stress and still they do not help in any way. I do not know if they are ignorant, lazy, neglectful or simply dont care or perhaps its all four.

Mariella replies Does it really matter? As Ive had occasion to say quite frequently in the past few months, family can be a great disappointment. Your letter kicks off in full-throttle outrage and only later gives us a glimpse of where part of the problem may lie. Not that any of this is your fault, but when dramatic exchanges occur in our lives its helpful to examine our own culpability and not just point the finger of blame at others.

Im at an age where sickness is creeping through my contemporaries and testing us all in how we respond to unexpected frailty in previously robust lives. Sympathy may come easily, but action can be hard as it often requires second-guessing the needs of others in a situation you havent experienced. Some rise to the challenge with aplomb, delivering homemade chicken soup and brilliantly gauging the simple, practical needs of a family in crisis. For the rest, lacking that instinctive nursing gene, it can be hard to establish where real usefulness lies. That inaction can lead to family and friends appearing unconcerned when, in fact, what theyre eagerly waiting for is instruction or a cry for help.

There are also those for whom illness of any form promotes personal terror and a desire to run in the opposite direction. Its easy to judge them as lacking in commitment, but Ive seen people paralysed by a mortal fear that is too deep for them to conquer. It doesnt mean theyre right, or particularly require sympathy but, as in all aspects of our friendships and family ties, understanding people who dont think or act like you lies at the heart of good communication. Illness for those in its immediate grip is terrible for the victim, and emotionally and physically draining for those doing the caring. Outside of that tight-knit group its hard to imagine that those around you are still struggling with their own petty worries.

Im not trying to make excuses for your family, but close encounters with mortality and serious sickness do have a polarising effect on those around you. People youve never liked turn saintly, while dear friends can seem strangely removed from what you are going through. Judging others for their shortcomings does seem to provide catharsis for those in the grip of suffering to vent their anger at the world for continuing to spin while they are going under.

Thats not to exonerate your family. Its almost unbelievable that they could turn their backs on you entirely at such a traumatic time. What you describe is an abdication of responsibility and a total lack of empathy. I cant help wondering what back history there may be. You say you have striven to avoid conflict in the past, but even if they have been allowed to entirely take you for granted, helping shoulder your recent burdens seems a minimum requirement for those in your intimate circle.

Yet here you are trying to understand what might have provoked it. Your recent trip to A&E has to be the final straw. Ive no doubt that the extreme stress you are under has been prompted not just by your wifes illness, but by the desertion of your family in your time of need and your inability to express your anger.

Waiting for them to experience contrition is clearly not working. You need to find your courage, like the timid lion in the Wizard of Oz. Demand to know why they have let you down so badly, tell them how devastated you have all been by their callous behaviour and then try to listen without exploding to the excuses they offer. If a total change in communication isnt enough to wake them from their stupor you may need to look elsewhere for the support we all need to be able to count on from those we love. And if thats the case may I suggest you rein in the family saint shtick and see how they survive when you abandon them, as they appear to have done to you and your family.

If you have a dilemma, send a brief email to mariella.frostrup@observer.co.uk. Follow her on Twitter @mariellaf1

Read more: https://www.theguardian.com/lifeandstyle/2016/nov/06/my-wife-had-cancer-but-my-family-didnt-call-or-visit-mariella-frostup

Couple Is Overjoyed With Pregnancy News After 5 Miscarriages

If only pregnancy was as easy as having a stork deliver your baby to your front door, then there would be more happier mommies and daddies. Unfortunately, that’s not a reality and many couples have to endure a lot when going through the often arduous process of getting pregnant.

For one couple, Matt and Emily, getting pregnant with their third child was especially difficult afterenduring fivemiscarriages within two years. Emily had many blood tests to try and pinpoint the cause of her miscarriages, but they couldn’t find any answers. While the situation looked grim, they always remained hopeful and never stopped trying.

So when Emily decided to take yet another pregnancy test, they were especially nervous. To break the tension, Emily makes fun of the fact that she normally goes for the cheap pregnancy tests that range from 88 cents to $1, but this time she opted for “the real one” to be a 100 percent sure. (Matt was leery of the cheap tests and needed further reassurance.)

In the video below, watch the couple’s emotional reaction to the pregnancy news and how their two little, adorable blond boys, Carter, 7, and Drake, 5, react to having a new addition in the family.

(Since the video post, Emily gave birth to a beautiful baby boy, Ethan Mecham, on May 4 2016.)

Pregnancy announcements can really tug at our heartstrings. More and more couples are getting creative with their big news, such as the daughter who surprised her father with her pregnancy news using the label of his back medicine and a sister who survived breast cancer and revealed her unexpected pregnancy to her brother by giving him a bottle of wine.

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Read more: http://www.littlethings.com/couple-is-overjoyed-with-pregnancy-news-after-5-miscarriages/