Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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Choosing you

Breaking news….

Babies in the womb are to be routinely offered a new screening test. This new test will allow each baby, or foetus, to screen their parents for a whole range of potential risks.

Very soon all unborn babies will be able to see if their parents carry any risk to their quality of life or future prospects. Screening will be offered for risks such as parents who may be a potential burden to the child in their later years, or parents who may suffer any one of life’s challenges that many people might face such as illness, financial worries, divorce, redundancy or even death.

Babies will be offered balanced and up to date information as to the kind of parents they can expect. Full support and counselling will be offered to the unborn should they choose not to take up their parents. They will, of course, be encouraged to try again for a better set in the future.

So far, only major risks are being screened for but experts say this is just the tip of the iceberg. It is envisaged that the potential for screening out a whole variety of parents is only a matter of years away. Screening experts say that, in the future, foetuses will be able to ask for all manner of things to be screened including the colour of their parents’ hair, or, in the case of males, whether their fathers may go bald prematurely. Some are hopeful that the new screening tests will be further developed to predict the standard of living the babies’ parents will have as well as the types of upbringing they can offer the baby, to include things such as a good school or a university education.

Some experts and parenting groups are urging caution, however. They say there are concerns that babies will even be able to choose their parents based on which football team they support or which supermarket they shop in.

Pro-choice lobbies are hailing the new tests are a major step forward for foetuses the world over. “My body, my choice”, said one campaigner.

However, it’s not all plain sailing. Despite the huge advances in medical science it seems that babies are largely ignoring the new tests. Despite much pressure on foetuses to take the test it seems that take up has been slow. Well, non-existent really. Doctors are baffled as to why babies seem reluctant to find out as much as possible about their potential parents.

It’s a mystery said one.

Or perhaps it’s a revelation.

Revelation noun – “the divine or supernatural disclosure to humans of something relating to human existence.”

 Parent – noun – “one that brings forth offspring”

#dontscreenusout


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Questions, questions…

We’re going to have a baby.

Six little, life changing words. And no…. this isn’t a personal announcement, sorry to disappoint.

It appears that just simply saying them is no longer enough. Social media has fuelled the creativity amongst expectant parents and they are finding more and more wonderful (and not so wonderful) ways of announcing their life changing news.

There are the more obvious ones, often involving feet. Hairy pairs of flip flopped feet lined up alongside pretty, pedicured toes and a cute pair of tiny flip flops.

Flip flop announcement

Then there’s the perfectly placed family of safety pins with a smaller pin inside the second in line.

safety pins

Or the loved up couple on a woodland walk, holding a vintage chalk board sign bearing the words and then there were 3 or something similar.

.dreamstime_s_56410253

I love them all.

There’s also the increasing trend of the Gender Reveal Party.

Guests are invited to place their guesses.

He or she, what will it be?

 Your vote…pink or blue? And leave a name suggestion too.

Then there are those that are, perhaps, a little questionable. A somewhat dubious cake posing the question…Will it be a cup cake or a stud muffin?

Sand couple                                             We're here cake

Or even the “We’re Here For The Sex” cake. Yes, really.

My particular favourite has to be the pink or blue champagne. Though, after a glass or two at that party, you risk forgetting what has actually been announced. Blue or pink.pink blue champagne

I love them all.

I love the hope – the joy and the excitement they generate. I love the fact that they celebrate a new life. A baby. Their baby. I love that they acknowledge it as a person. A precious baby, a precious new life. I share their joy.

Welcomed. Wanted.

What will it be?

But not every expectant parent wants to celebrate. Or even make an announcement. For whatever reason. I cannot judge them if they do not. Some start off by announcing and celebrating, until a routine scan brings the party to an abrupt end.

A problem. An anomaly. Or perhaps just unplanned leading to some very real difficulties for the mother/father.

Heart wrenching dilemmas.

So the language changes  as does the question. Often not from the parents, it has to be said.

The contradictions begin.

The word baby is replaced by the word foetus. It’s no longer a person to be looked forward to. To be celebrated. To be wanted. It’s a problem.

A fetal anomaly.

Unwelcomed. Unwanted.

A widely held view is that it’s not a baby at all. It’s a future person – according to Catherine Joynson’s recent blog reflecting on a report into Non Invasive Pre Natal Testing (NIPT) from Nuffield Council of Bioethics.

Not an actual person. A future person.

Yet, over 90% of the time, at the moment a prenatal diagnosis of Down’s syndrome is given, that future person becomes a no future person.

Women, couples, have a way out. It’s a very painful one. But it’s there, under the banner of choice. Autonomy – a word that has become sacrosanct. Termination is, invariably, the go to option.

The word foetus (fetus) in Latin means offspring. The bearing, bringing forth or hatching of young. It is a process.

And you will never convince me that it is in the mother’s best interests, (other than when her life is in danger) to help her to get rid of her offspring; to bring that process to an abrupt end. We owe it to women to find better ways to help and support them through birth and bringing up their offspring.   Instead, we – society – plays the choice card. The Ace of Spades. To end the game. Silence the opposition.  Kill the debate. The death card.

Choice has so little value when the menu has been limited. Is it really a choice at all…when there are so many external influences placed on women from all corners of society?

No, the question on these women’s lips is not “what will it be?”

They have been told that already. A Downs baby, disabled. A burden; a child with learning difficulties. A strain, emotionally and financially. Outdated and misinformed ideas fill their heads. And, like I did, they believe they couldn’t love a baby that isn’t perfect. They believe they wouldn’t have the strength or the resources to care for a child like that. They are almost certainly broken-hearted. Their dreams have been crushed. The party over, before it could even begin.

These women, these parents, are badly let down. My heart hurts as much for them as it does for the babies they had, perhaps, planned to celebrate.  They have no idea how much they would come to love their baby, their fetal anomoly, as I did mine.

We must surely help women to birth their offspring, not kill them.

To be or not to be.

That is the question.

dreamstime_s_86849970

To quote Lord Shinkwin, a disabled peer, speaking recently in a debate about Abortion on the grounds of Disability:

 “Well this fetal anomaly, this proud Member of your Lordships’ House, is having none of it. I utterly reject this medical mind-set that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I beg no one for my equality. I know I have as much right as anyone to be alive”


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Rhinos & Elephants

The Duke of Cambridge, or Prince William, as he’s more fondly known, has a little girl called Charlotte. Charlotte turned one a few months ago. Charlotte is a beautiful little girl. I smile when I see pictures of her. She is a bringer of joy. Charlotte is too young to understand the attention that surrounds her. Her parents will do all they can to protect her from any harm. As she grows up, she will undoubtedly become more aware of how the world views her. Most will adore her, but some will hate her. I feel sorry for Charlotte.

Yesterday, her father gave an impassioned speech about African elephants and rhinos. These magnificent animals are under threat from poachers. From people who want to make money out of them. The Prince said.. “Rhinos face extinction in our lifetimes, as we struggle to correct lies about the supposed benefits of using its horn as a drug,”

They could be gone from the wild by the time Charlotte turns 25.

This is sad. Very sad. It is abhorrent that a price tag is on these animals in the first place. They are priceless.

But all is not lost. The Prince reassured us.

He said, “There is huge momentum building from governments, businesses, conservationists, and the public to take the steps required to stop the killing.”

Standing up for those who have no voice. Doing all they can to stop this massacre. Fighting greed and debunking the lies surrounding the health benefits of the elephant tusks.

This is good. Very good.

I have a little girl called Hazel. Hazel is about to turn 5. Hazel is a beautiful little girl. She makes people smile. She is also a bringer of joy. Hazel is too young to understand the attention that surrounds people like her – people with Down’s syndrome. As her parents, we will do all we can to protect her from harm. But, as she grows up, she will undoubtedly become more aware of how the world views her. Many will adore her, but many more will hate her. My heart breaks for Hazel.

The onset of the more advanced prenatal screening, or NIPT as it is known, means that more and more countries are racing towards “eradicating Down’s”. Though, of course, they will never actually achieve this as women will keep getting pregnant with babies that carry an extra chromosome. So they will terminate. Simple.

By the time my daughter reaches the age of 25, Denmark could well be “Down’s syndrome” free. Actually, this may happen by the time she is 19, if, as predicted the last baby with Down’s syndrome is born there by 2030.

And, as with the rhinos, there is also huge momentum building from governments, businesses (pharmaceutical companies), and parts of the medical profession. Only this momentum is not trying to stop the killing. It’s supporting it. Promoting it. Presenting it as a good thing even. Telling us this is choice. Poised to roll out the new non-invasive prenatal test far and wide without fully exploring the ethical implications.

This is sad. Very sad.

It is abhorrent to me that babies with Down’s syndrome are being given a price tag. A tag that quantifies how much of a saving can be made by the NHS if they are aborted. And, as many suspect, a tag that quantifies how much money can be made by the pharmaceuticals who promote these tests.

People with Down’s syndrome are priceless. As are you and I.

So now please allow me a little poetic licence in re-hashing the Prince’s words …..”People with Down syndrome face extinction in our lifetimes, as we struggle to correct lies surrounding them.”

There is another momentum building however. And it’s gathering speed. It may not have royal approval or backing, unlike the rhinos and elephants, but it is gaining attention.

Hour by hour. Day by day.

I am honoured to be part of this ever growing group of people that are standing up for those who have no voice. Exposing lies, debunking myths and bringing joy and hope to parents faced with a diagnosis of Down’s syndrome.

This is also good. Very good.

 

Watch actor Sally Phillips investigate the issues surrounding the new prenatal screening test in a new documentary being aired on BBC2 , 5th October, 9pm.

 

#dontscreenusout


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Egg and Spoon

After one of the wettest summer months on record, the last thing you’d think I’d be doing is praying for rain. And yet, at 7am on Tuesday morning, as I looked out of the window and up at a dark, heavy cloud, that’s what I did. I prayed for rain.

Thirty minutes later and no rain.

Instead,  I got a text message from my eldest child’s infant school, happily declaring “Sports Day Is On!” And with that, the day ahead loomed larger and heavier in my mind than all the clouds put together.

It’s fair to say I’m not a fan of sports day. Putting aside my own childhood loathing of this school tradition, I now have another reason to dislike it. Fear it even.

My eldest daughter has Hypermobility. A condition that affects her in numerous ways – most of which are not immediately obvious. Poor muscle tone and weak joints combine to make every day, ordinary activities, that much harder for her. From climbing stairs to doing up a zip or a button, there are myriad ways in which she struggles.

And, top of the list of everyday and ordinary is PE. Sports. Physical activity.

Her first Sports Day she missed due to Chicken pox. Then, last year, she spent weeks worrying about it. Though, to be fair, her teachers were fantastic. Lots of support, practice and encouragement in advance of the day. And, somehow, despite coming last in every race she managed to end up on the winning team.

“It’s not about winning, it’s about taking part,” was the school mantra.

This year was different. And although she didn’t spend weeks worrying about it, I did. A week to go and I was checking the forecast daily, ever hopeful that the day would be thwarted by the British weather. Cancelled. I could then relax knowing that neither she nor I would have to go through the trauma.

“It’s not about winning, it’s about taking part”.

No. I don’t believe that either.

Too painful. Too difficult. Too risky. It’s not for me. It’s not for her.

Delete. Get rid. Don’t bother.

Had my prayer been answered, I would have unwittingly missed out on one of the best days of her school life!

First came the hurdles; small plastic tubes barely raised above the ground.

She got to the other end. She didn’t fall. She was smiling. Phew.

Then the sprint.

“It’s not about winning, it’s about taking part.”

Last.

And so it went on.

Last, last, oh, ok last.

Everyone cheered and clapped.

It doesn’t matter. It’s about taking part.

Lies.

Not that I needed her to win a race. I just didn’t want her to be last each time. I could tell her again and again that it doesn’t matter, but as she is the one who consistently sees everyone else from behind then it matters. Whether they are running a race, climbing a climbing frame or riding a bike or scooter. It is soul destroying to be the one that can’t.

Egg and spoon race.

“I’m good at the egg and spoon race,” she told me at breakfast.

“That’s good,” I said. I didn’t believe her.

She only went and won it…joint first with another child.

Hoo blinkin’ ray!

I felt a spot of rain. Great! Let’s stop now. Finish on a high. Quit while we are ahead.

“And now the sack race!” The Head Teacher announced.

M’s nemesis.

She clambered inside the sack. An achievement in itself; she couldn’t do that by herself a year ago.

Ready, steady, go.

M lurched forward and so did my stomach. Children pinging up and down; none of them particularly co-ordinated, but all of them way ahead. She got further than I dared hope but then I saw the look on her face.

A look of worry, panic. Close to tears.

 Parents and children alike willed her on. I am grateful for them.

A teacher stepped in and came alongside her. Then another.

And, in a moment, her biggest fear became her greatest joy.

 They scooped her up, still in sack, and bounced her over the finish line. The widest smile on her face I think I’ve ever seen.

It’s not about winning it’s about taking part.

Oh I see. Yes.

When others come alongside us in our struggles life is so much easier to bear. Joyful even.

There was more. A toddler race followed and younger sister Hazel took part from the comfort of her wheelchair. She took part. She enjoyed it. She was part of a community. She was included.

And to think I could have missed it all if I’d had my way. If my fears had been allowed to cancel Sports Day.

What. An. Idiot.

And, strangely, I am taken back to that April afternoon, 5 years ago, when a Doctor told me my unborn baby might have Down’s syndrome or may even die.

I remember the fear. Fear of the unknown. All I saw was difficulty and trouble. Risk. Pain.

To be avoided. Cancel this baby. Let’s not go there.

Only fear.

No one told me how much this child would enrich my life. How much beauty she would bring. How much laughter, smiles and joy.

I knew nothing of the joy.

Risk. They called her a risk.

I call her a joy.

I didn’t cancel the baby. I wasn’t strong or courageous. I was frightened. Afraid.

But it was the best decision I have ever made.

So to the expectant woman perhaps reading this who has had ‘the test’ and has been told her baby may have Down’s; I get it. I understand how you feel. I understand the fears you may have. I felt that way myself. But if there’s one thing I could change about the way you’ve been told the news it would be to remove that word ‘risk‘ and replace it with ‘joy’.

 There is, it seems, no test for joy. Only risk.

Some fears are definitely worth facing, some risks worth taking.

 

Miriam sack race downright joy

 

 


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Voices

So many voices just now.

Voices of reason.

Voices of hate.

Voices of sound arguments.

Voices of the implausible.

Voices that are angry.

Voices that are incredulous.

Voices that are disappointed.

Voices that are elated.

Voices that are fearful.

Voices telling lies.

Voices telling truth.

Voices twisting truth.

Voices that are scared.

Voices that are triumphant.

Voices that are evil, hate filled, stirring up violence.

Voices that are compassionate.

Voices that give hope.

Voices that speak against injustice.

Voices of the classes. The rich, affluent, well off, comfortable voices.

Voicing.

Voices of the poor; the poorest in society.

Needing to find a way to even use their voice at all. Their views are so rarely sought; they fail to meet the requirements for an educated debate. Their opinion does not count. It is uninformed. It is uneducated. It is unworthy.  It must not be allowed to have influence unless it first becomes those things. It’s too risky. Too flawed.

I think I may have heard this sentiment elsewhere and it makes me uncomfortable.

I recognise my past failure to listen to this kind of voice. I have ignored their cries. Ignored their anger. Silenced their voices. I am not a champion for the poor. I do not claim to know what their lives are really like. But I have judged them and, at times, hoped they would not impact my life too much. I don’t like mess.

And some voices are never heard.

They are silent.

Unable to speak.

Deemed unworthy of a voice at all. They don’t reach the standard of the informed or educated.

They are seen as a “risk“. A problem. Too costly. Too flawed.

In the UK around 90% of babies prenatally diagnosed with Down’s syndrome are never given a voice. Their voices are silenced. Even those that are given a voice may then go onto face ignorance and discrimination. Their voices are ignored. Deemed irrelevant.  “Backward” or worse, “retarded”. Never amounting to much.

I cannot ignore their cries. I cannot stand by as their voices are silenced.

My own little “risk” is nearly five years old. She has not yet truly found her voice. And yet she speaks more loudly, more beautifully, more lovingly and more joyfully than any other voice I have heard. She speaks into my life and the lives of those she meets. Costly? Hugely so, but a price worth paying a thousand times and more. She gives back far more than she ever takes.

Prejudice and intolerance come in many forms and I am not immune from their guises.

Voices need to be given to those who have none. However costly. However risky.

And the risk may be overwhelmingly worth it for all.

Listen for the voices we cannot hear. Voices of those who are actually more alike than different.

So I say this firstly to myself for I am guilty of so much that has not helped others: Shout louder than the voices filled with hate. Listen to the voices who are disappointed, fearful and hurting. Whatever their background, wherever they are coming from. Offer hope not judgement.

“Love must be sincere. Hate what is evil; cling to what is good.”


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Turn Back The Clock

 

May is nearly upon us and, for me, this means one of my favourite things. Chelsea. Not the football club but the Flower show. Not that I’ve ever been. I’d love to, of course, but the demands of caring for a young family with additional needs prevents trips like that at the moment. One day I will go. One day.

For now, I’ll settle for a week or so of high definition images via the BBC and Mr Titchmarsh & Co.  Pure indulgence. A week of dreaming that my humble little back garden will somehow also be transformed into a panoply of perennials, a cornucopia of chrysanthemums and cordylines.

It never is.

I have dandelions growing in my conservatory roof.

I’ve yet to hear or see the humble dandelion get a mention at Chelsea. I’m not sure they’ve ever even heard of one.  After all, it’s a weed. Not wanted. No place for it. It would spoil the garden. Ruin it, even.

The dandelion is hated. People wage war against it, so much so we spend millions of pounds on products aimed at destroying it.

The dandelion will grow anywhere. Except where it has been eradicated.

Yet the dandelion is also loved. Childhood games spent telling the time with a dandelion clock. So perfectly formed, so intricate, so gentle and so beautiful to look at. Then, as the seeds are blown, delightfully, by a childish puffing of cheeks, they are carried effortlessly away on the breeze. Landing somehow, somewhere and there, they begin to make their own mark in the world. A world that doesn’t really want them. Wishes they weren’t there. Will do all in its power to eradicate them.

When do these same children learn to hate something they once cherished? When does fear replace this childlike acceptance?

I don’t know the answer but somewhere along the road it happens.

Fear.

And so it is with having a child who has an extra chromosome.

Fearful.

At least it was for me, and, given the statistics on how many terminations take place in the UK following a diagnosis of Down’s,  I think it is fairly reasonable to make the assumption that fear has a huge part to play for many who find themselves in the same position as I did.

I was afraid of the dandelion.

I was afraid of how it would spoil my garden. Take over. Damage. Ruin its perfect appearance. Make gardening harder.

Of course, my garden was never perfect, but I strived to make it so. I could not let the dandelion spoil this dream.

I was affronted by this ‘intruder’. I believed the lie. That the dandelion was harmful. That the dandelion was ugly. That the dandelion had no place in my garden.

But I could not eradicate it even though I was told it was possible. Easily arranged. For the best.

And, I am forever thankful, that my fears although real, were never strong enough to take hold of the situation. They were never allowed to go to the garden centre and buy the weed killer. Though, for a while, I am ashamed to admit, I envied those who could.

I began to love the dandelion. I began to cherish its beauty.

And, over time, the shame I had wrongly felt at having a garden with dandelions was replaced by a sense of awe and wonder at this beautiful plant. I discovered its beauty, its benefits and its immense joy. I love how it pops up anywhere, it’s deep vibrant yellow flower forcing its way through the most hardened of soils and singing in the sunlight. Enjoying life. Enjoying being there. Dandelion experts even tell of the health benefits it can bring. Who knew?!

The dandelion is not supposed to be here. Or so you would think.

I wish I could turn back the clock and re frame the dandelion.

It deserves it.

The dandelion makes me smile.

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Duck Life

Swimming pools are my worst nightmare. Public ones anyway. A cacophony of shrieks, shouts and screams. An echoing sensory overload nightmare for one of my children and a place of mainly slips, trips and falls for the other. Never a relaxing experience, usually one that ends in tears.

So our recent mini break was made all the more relaxing by the addition of, no, not a private pool, but the next best thing. A hot tub.

The girls loved it. Hazel learnt to hold on to the sides and step round it – this is a major achievement for someone who can barely stand, let alone go anywhere on her feet. M loved it too. Playing imaginary games with her mermaid dolls and plastic, grubby looking yellow ducks or inventing silly games. Admittedly, neither did much swimming, though M tried, achieving her width certificate in record time. Great fun. Until…

Two little ducks went out one day, over the hills and far away…..

You know the rest.

Quack Quack Quack.

Only one came back. Literally. When our backs were turned, the more adventurous of the two little plastic ducks went…

Over the edge.

 And into an abyss. Well, into the gap between the hot tub and the log cabin. But it may as well have been an abyss. Dark. Deep. Impenetrable. No way back.

Gone.

Tears. Of course. I empathised. I may have even cried some too – for good measure. To show I felt her pain. Ducky had gone and so we grieved.

Mummy you have to get it back.

Sorry, sweetheart. That’s impossible. She’s gone.

Daddy. You have to.

We’ll get another one. I promise her. It will be better. It won’t be grubby looking. New. Shiny. Perfect. She’ll soon forget about it. Move on. Life’s losses and all that.

It’s only a toy duck for duck’s sake. It’s not important. We can sort this.

Even now, I still underestimate my daughter’s powers of persuasion.

24 hours of intense protest and ducky has come swimming back. Nothing short of a miracle I might add. My husband going beyond the pale to reach down/under/bent double/contortionist style all for the sake of a sorry looking yellow duck.

Sometimes we forget what matters.

We dismiss. We minimise. We play down the value of others.

We think about ourselves a little too much. Or perhaps, too little. We underestimate what we are capable of doing, when push comes to shove. We don’t feel up to the task. We avoid difficulty and pain, sometimes selfishly, other times because we too, feel unworthy, unloved. Afraid.

We tell ourselves our comfort is paramount. Our lives are too short to spend on something that is too difficult or not important. Less than. Worth less. Worthless.

M didn’t. To her, that little duck meant the world. The thought of leaving it behind, saying goodbye, replacing it (as if!) not valuing it, well, that was beyond her reasoning.

Caring is what she knows. It’s inherent in her. And I love that she is wired to care.

Caring for people that the world tells us are worthless.  We can deal with that, they say. At both ends of life, start and finish. Get rid. Move one. Get another one. It will be better than this one. Burdensome. Forget about it. It’s kinder that way. Best for everyone.

Except the duck. Whoever that ‘duck’ may be. An unwanted foetus, an elderly person with dementia or suffering with some other incurable disease, a disabled person, a lonely person. And, for the record, I’m not calling anyone a duck as such.  Though I happen to think ducks are very wonderful creatures! That’s simply the toy she was playing with….M would have felt the same way had it been the mermaid that had disappeared. She does not discriminate between mermaids and ducks, they are equally loved.

I am thankful that my 6 year old is not as quick as I am to give up.

I live in hope that she and many others of her generation will want to explore – really explore – what caring for others should look like. They won’t simply accept the idea that because technology allows us to do something, we should. That just because we have a right we should use it.  Rights are fought for – hard won battles to supposedly allow freedom of choice and dignity. Yet I often wonder what society would look like if we focused less on our rights and more on our responsibilities to each other. Maybe those same ‘rights’ wouldn’t even be needed, if we truly cared about each other’s welfare.

And M, at just 6 years old, gives me hope that she will always be willing to go the extra mile for whoever needs it and not just look for the ‘undo’ button. Perhaps she will look for ways to rescue, help and care for those in trouble. She will look for solutions. She will want to care. Want to rescue. Want to love. Want to speak life over others. She’s already doing it, and, according to her teachers, it’s not just with ducks.

Her persistence sometimes drives me to distraction.

I thank God that it does.