Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Windmills and Bicycles

I love the Chelsea Flower Show. Glorious, decadent, sometimes ridiculous, but always sumptuous. A televisual feast that I dine out on each May. A week long explosion of colour in my living room (I’ve yet to actually go there). Designers clamouring for hard won awards from the judges. A label to be proudly displayed for all to see, opening doors to further fame and success.

Inspired by this sublime, horticultural festival I annually turn my attention to my own patch of ground or ‘garden’ as it’s rather hopefully known. I imagine how I will transform it into my own haven of tranquility; one with an edgy, urban, free flowing design, softened by wispy aromatic planting and ethereal water features. Award winning. Gold Standard or at least a Silver Gilt.

But not today.

Today the paddling pool is out. A large blue inflatable bath sits slap bang in the middle of the lawn. Well, perhaps lawn is a little optimistic. But there’s definitely grass, of varying lengths. Quite a few patches of the stuff in fact.

There is a border…of sorts. Hardly wispy though. More weighty. Overgrown even. A tree or two. A couple of swings, a small trampoline and a shed.

Oh. And a windmill.

A bright, colourful and very large plastic windmill.

You see, the garden of my dreams is not the garden of my reality.  The garden I envisaged is not a bit like the one I actually have. A different reality.  Not how I imagined.  A bit rough around the edges in places. Needs maintenance.

The garden I have is magical.

Yesterday, she made the windmill spin. My daughter has never done that before. The windmill I purchased on a whim from a cheap and cheerful retail outlet just the other day.

She’ll enjoy looking at that.

But she did more than look at it. She made it spin. She actually made the windmill turn. Over and over again. An action that most children would learn to do in a heartbeat has taken her years to accomplish. It does not matter. She did it. And she loved it.

Our garden is a safe place for a child with Down’s syndrome.  A place for her to be. To feel, to smell, to touch, to taste, to explore. Our garden is her space. A safe space. A nurturing space. A joyful space.

It’s also a place where her older sister can be herself. It’s where she can, if she chooses, practice riding a bike – away from the quizzical looks of others. She has yet to be able to ride a bike properly. Dyspraxia – a life-long developmental condition – has recently been added to the list of our own awards. Another formal label now appears at the top of the endless stream of hospital letters that we receive; I’m not complaining – labels can help open doors to a different kind of success. Dyspraxia makes the things that most children take for granted so much harder for her. Climbing, swimming, running, jumping, riding a bike or a scooter – they are all typically huge challenges for a person with Dyspraxia. It also brings with it a host of daily sensory challenges and stresses.

Our garden is her safe place too.

We are soon to have some long overdue landscaping done. Some order is most definitely needed, I have to admit.  A patio would be nice.

Chelsea is glorious. Perfection. But in many ways it’s an illusion. Temporary. Taken down once the cameras have been switched off.  For most people, their gardens are not like that. And, as much as I love Chelsea, I am sad at how it leaves me feeling when it’s over. As though my garden isn’t good enough. Defective. Less than.

Our garden is not a Chelsea garden. Yet, despite perceived flaws in its design it brings great beauty and depth to our lives. Sometimes chaotic, sometimes peaceful. It is an ever changing landscape that challenges me and captivates me at the same time. It is a tough but beautiful place to be. I want no other garden.

I think Chelsea is perhaps selling fake flowers. Artificial.

Someone told me once that I could aim for perfection with my unborn child. By not having her. By ending her life before she was born and trying again for a better one. A gold standard, award winning one.  I like gold, I really do.

But I prefer windmills.

Hazel and windmill

 

 


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Wait for me

Wait for me…

I’ve never been very good at waiting. As a child, if you gave me a Christmas or birthday present before the big day, I’d be itching to know what was inside. Prodding and poking it until I’d eventually worked out exactly what was concealed. I couldn’t wait.

It was the same when pregnant with both my children. Boy or girl, I wanted to know. I didn’t need to know, I just wanted to. For no other reason than my curiosity got the better of me. I admire couples who choose not to know the gender of their unborn baby. They have a level of self-control that evades me totally.

But having had two children, both with additional needs, I have had to learn, really learn what it is to wait.

“Wait for me” is a phrase often heard in our family. My eldest child M, recently formally diagnosed with another condition – Dyspraxia (DCD), uses this phrase the most. With good reason.

You see, for her, a simple walk with family or friends means twice the effort.

What most of us able bodied do with relative ease is more challenging for her. It’s easy to overlook the work she has to put in to keep up the pace.

So she reminds us.

Wait for me.

Her friends and peers are supportive, but sometimes they, quite understandably and naturally forget; running on ahead in their excitement. Leaving her behind.

Wait for me.

Just the other weekend, we found ourselves staying in the beautiful Welsh/English border countryside with friends.

Outdoors obviously called for some exploration.  Not the easiest of terrain for anyone with mobility issues! So, to see her very close (and particularly agile) friend hold back and help her negotiate a steep grassy slope, hand in hand, made my heart sing.

The friend waited.

She didn’t have to of course. No one would have blamed her for running on ahead, doing exactly what children do.

The friend valued my daughter and was prepared to put her own agenda to one side.

Valuing each other is something increasingly missing in our society. Really valuing each other I mean.

Putting the other person ahead of ourselves. Seeing their worth and valuing them for who they are, however different they may appear. Going at their pace, looking for ways to help them move forward; however much that may slow us down. Not leaving them isolated or abandoned.

The friend made a choice to value. That choice made all the difference; to my daughter, and to me.

Nearly seven years ago, when doctors told me my unborn baby might have Down’s syndrome or another  condition, I chose to wait. I chose not to have invasive tests that would tell me for certain if that was the case. It wasn’t easy to wait. I won’t lie – part of the reason for not wanting to know was that I was in denial about even the possibility of having a child with Down’s syndrome. Part of me hoped that it was all a mistake and everything would be “fine” in the end.

Wait for me.

Hazel, my youngest, is now six and a half years old. She loves life and most of all she loves and values people. People like you and me.  People.

I waited for her.

She arrived and our lives were undoubtedly turned upside for a while.

She patiently waited for me to come to terms with her extra chromosome.

I am eternally glad I waited for her.

Waiting for her has taught me more than anything about the priceless value of human lives. … hers, mine, yours, theirs.

I hope that women really do get a choice when it comes to the new prenatal screening tests (NIPT) being introduced across the NHS. I hope that choice actively includes supporting women choosing NOT to screen if they really don’t want to. Supporting them instead to wait. Supporting their choice, instead of pressuring them to ‘choose’ termination. There are far too many real life examples of the latter happening to women.  I know, I was one of them. That’s not choice.  There is another. And it’s a choice well worth making, I am certain of that.

There is real value in choosing to wait.

Wait for me.

#equallyvalued

#dontscreenusout


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Light up, light up

The wise men have barely reached the infant Jesus to impart their gifts, yet up and down the UK, Christmas trees and decorations are being pulled down as fast as they went up. Only the few holding out for the tradition of 12th night, before they pack away the baubles.

We are the few this year. Prompted mainly by our youngest child’s response last year when we took the decorations down on New Years’ Day. Hazel does not yet understand the why’s and wherefore’s of Christmas; she just embraces the magic of all she sees. Christmas lights being top of her list. To see her, last January, sat forlornly staring at the empty space where our tree had been was too much. Think of a puppy looking for its owner to return from a long day away and you’ll get the idea. Only this went on for days afterwards. She sat and solemnly wondered where on earth it had gone. Why had the lights gone out?

I resolved to do better for her next time.

So this Christmas we went for it. Tree up by 1 December. Lights, lights and more lights. Despite being told by some it was too early. For Christmas lights mean more to Hazel than any present. So much so that a few days before Christmas we were treated to an absolute feast of lights by an amazing charity Give Them A Sporting Chance who so generously took us on an all expenses paid trip to see the Festival Lights at Longleat. Providing us with our very own nurse and extra pair of hands, we were able to literally overdose on a Christmas sensory wonderland of lights!

It was utterly magical. Hazel’s face, as she stared up at a 100ft Christmas tree that lit up in every colour on the spectrum, was a picture! Literally all her Christmases came at once.

 

Longleat tree

A day we will never forget.

Back at home, our humble little Christmas tree did not lose its appeal for Hazel even though she had seen much a bigger and better one on our special day out. It’s not looking its best I have to admit. Not because the needles have dropped – we have yet to brave a real tree; it’s fake all the way here. No. Many baubles and trinkets that started off carefully spaced around the branches are now on the floor – either pulled off or kicked off by Hazel in her fascination with the tree. Branches are bent and sticking out in strange directions. The angel is still sitting proudly on the top as Hazel’s reach isn’t quite that far yet, but it’s only a matter of time.

I refuse to bow to popular opinion that says I should take it down. Just as I refused to take any notice of those who said I was putting it up too early.

Popular opinion perhaps, but it’s my choice.

And so the lights remain.

Hazel sees in that tree something the rest of us don’t. She would happily stare at it 365 days of the year I’m sure.  She is mystified why it has to come down.  She’s got a point. All that excitement, all that expectation of just a few weeks ago. Preparations seem to get earlier and earlier. Some houses in our street were decorated in November! And yet, just a few short weeks later, it seems most people can’t get rid of their decorations fast enough. Put them away, forget about them. Move on. Tidy up.

Hazel sees something in Christmas that most of us don’t. She doesn’t fall for the same trappings as we do. She has no expectations of what should/shouldn’t happen. She cares little for the John Lewis Christmas TV ad and has no excitement about hanging up a stocking on Christmas eve.

She sees no reason to be sad after Boxing Day when all the presents have been opened. She feels no sense of disappointment, as many of us do – that Christmas promised so much but delivered so little.

She sees only lights. The colours. The sparkle. The joy.

I wish others could see things the way Hazel sees things.

I wish parents who are given the news that their unborn baby has Down’s syndrome could see things differently too. Some do, but most* don’t. The excitement of expecting a baby is quickly replaced with fear. I know. I was one of them.

I wish they could see things as we now see them. The few. Instead, they, perhaps understandably, give way to the popular opinion that bringing up a child with Down’s syndrome is a huge problem; to be avoided at all costs. They think it’s their only viable choice.

It isn’t. It really isn’t.

For them, the lights go out and the tree is taken down. Tidied away. As if it were never there.

I wish they could see what Hazel sees.

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I’ll be right beside you dear

Snow Patrol

  • In the UK, 90% of babies found prenatally to have Down’s syndrome are aborted.


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Playing Games

Playing games. A Christmas tradition for many. Families bonding or, more likely arguing, over a round of Trivial Pursuit.  It’s a common scene played out across many a coffee table in the UK over the festive season.

Growing up, my personal favourite was Top Trumps. A pack of cards with facts and figures about some deeply important subject such as Football Players or, in our case, Supercars. Data such as Height, Weight, Matches Won, or in the case of the cars, Engine Size or Top Speed scored and listed against a picture of the car. The idea being that you tried to “Trump” your opponent’s card with a winning fact from your card. Very quickly you learnt which card was the best. The card to trump all cards. And if you didn’t have this revered card in your hand you were definitely playing on the back foot. Failure almost certain.

Oh, the sense of superiority you felt as you held that special card aloft. Victory was sweet as you slapped it down on the table. A moment to savour.

Top Trump. I win.

Out of favour for a while, Top Trumps have made a resurgence in recent years. And there is now a broader choice of subjects that cater for all tastes.

There is also an unofficial version of the game being played out. You can’t buy it in the shops, it’s not actually for sale. But it is widely played. Maybe you’ve played it yourself. Perhaps you’ve even held up the trump card and used it.

The theme?

Babies In The Womb.

Or foetuses...depending on which version you want to play.

Oh and did I mention that these babies have or may have Down’s syndrome?

The cards themselves are full of information. However, in older versions of the game stats are largely out of date. Take the category of Health. This may be very low scoring in those games. If you are unfortunate enough to be playing with this version then you will not be aware that science and medicine have moved on. The health of a person with Down’s syndrome can and has been vastly improved. People with Down’s syndrome can now expect to live well into their sixties and even seventies.

Let’s try another category then. Quality of Life. Again very low scoring in earlier versions. You’d be forgiven for not realising that a person with Down’s syndrome can lead a GREAT life! This score is now significantly higher thanks to early intervention methods, education and the love and care and support of a good community.

More up to date versions of this game are, thankfully, now available. These versions contain accurate data and positive information about what it means to have Down’s syndrome. Sadly, not everyone is using the new version yet. If only the medical profession, the media, and other influential groups could put down their vintage decks and get with the times. Expectant parents might actually be served so much better.

It appears, however, that both packs do contain one card which, according to the rules, trumps all others.

This card has and is constantly used to end the game. To silence the opposition and to bring all interaction to an abrupt end.

The Choice Card.

My body my choice.

Her body, her choice.

It’s the trump card.

It’s that card that says nothing else is as important as this. A line that cannot be crossed.

As opposing sides of the game wave their cards in the air, shouting at each other, Top Trumps starts to look more like a game of Pit. Descending into chaos, neither side hearing the other, tempers flare, already deeply held positions become further entrenched, until down comes the trump card.

It’s the card that says Game Over.

Choice. A word that should mean freedom has become a word used to bring closure. An end to discussion and, 90% of the time, and end to a pregnancy where an extra chromosome has been detected.

If only we could really begin to work beyond that stop line of choice. How different society might be if it could give women who find out their baby may have Down’s syndrome a real choice. One that is up to date, informed, positive, filled with hope not despair. Truth not lies. One where women can access a choice of counselling services who are not backed by those who seek to profit from the business of abortion. Counselling services who help women explore every option and don’t simply assume termination as the only answer.  Stories of hope not scaremongering.  Changing the narrative about a condition that is often portrayed with so much fear and even hatred. Changing societal attitudes to all disability, making room for everyone. No longer speaking of Down’s syndrome as something to be feared. Helping women to birth their offspring and not believe (as I thought – for a while -at the time) that having a baby with Down’s syndrome was the end of the world. I was so unbelievably wrong about that!

Choice is surely about taking positive action. Looking for the best possible way forward in any situation. Choice can be the start of something, not just the ending of it.

Yes, it’s always a woman’s choice. That is not being disputed here.

But it’s all our responsibility as to what that choice really looks like.

It’s time we put the cards down and played a different game.

#choosehope

#choosetruth

#chooselife

#dontscreenusout

Positive About Down Syndrome. A website by parents for parents and parents to be.


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Consider the Tortoise

Pets.

I’m not a fan of them, as those who know me well will testify.

Brief forays into rabbit or guinea pig ownership as a child were enough to convince me that pets were not for me. A fear of dogs from an early age led to a general avoidance of all things four legged, furry or winged.

They’re just saying hello are words that, quite frankly, make me cross. Leave me alone. I won’t annoy you, so please don’t annoy me…. has generally been my motto around other people’s beloved pets, with one or two exceptions.

But I am fascinated by the adoration and reverence afforded to our nations pet animals. Cats, dogs, hamsters, rabbits, guinea pigs, stick insects and the like.

Why? Why do people go to so much expense, time and effort for these creatures? Surely their life would be easier without them? Just think of the vets bills. And what about the commitment? The lack of freedom when you’ve always got to find someone to feed the fish or put the cat out when you are away? Or the expense of a cattery or kennels or as is most fashionable these days a pet/ house sitter. And then there’s the poo. I’ll stop there.

I don’t get it. But I do accept it.

I have no right to criticise people who are pet owners. They know the costs but they think more of the humanity of owning a pet. The benefits. The joys. All that owning that pet will bring to their lives and the life of their pet. They are not selfish people.

They get it, I don’t.

I do, however, get the desire to care for, love, receive and give affection to another. The humanity of caring, nurturing, treasuring and enjoying another being.

Consider the humble tortoise.

Once freely available and cruelly imported to this country before the law was tightened and permits for keeping them were introduced.  For humane reasons.

Tortoises make great pets according to some. They sleep for months on end, don’t need to be taken for a walk and children adore them. Oh and they happen to live for decades. They may even outlive their owners! A fact that clearly hasn’t put off the increasing number of people who now keep tortoises as pets.

According to a recent article in The Telegraph, we as a nation (UK) spent a whopping £6 billion on our pets last year. Heartless animal avoiders like me might argue that this money would better spent elsewhere. On the NHS, for example, or in our schools.

But whilst I may not understand the nation’s pet obsession, I will not criticise it. Nor will I say that this is a cost than can be avoided…“if only pet owners would stop being so selfish and think how better that money could be spent.

Yet…. these are attitudes that families of people with Down’s syndrome come across frequently, especially in the media. Worse still, expectant parents are faced with an ever increasing pressure for their unborn to be screened for the condition with the rolling out of a new pre natal screening test – known as NIPT. (Non Invasive Prenatal Test).

Why?

It’s so expensive to care for a child with Down’s syndrome.

They are a burden on society.

Well, who’s going to care for them when you’re too old?

They will outlive you. How do you feel about that?

Society is better off without them.

It’s selfish to knowingly bring a child with the condition into the world.

It’s not fair on the siblings.

Your relationship will suffer.

These are, shockingly, all real opinions that have been put to families like mine all too frequently. Not only to us but also to parents who, after hearing them from various sources, decide they can’t go through with a pregnancy that has been declared defective by the detection of an extra chromosome.

My question is this. If, as a nation we can pride ourselves on our passion for pets and place high value on their humane treatment and care – however long they live, why can’t we do that for people like Hazel? For those yet to be born?

Consider the humble tortoise. Mistreated and now, thankfully, protected. Cherished even.

Why, if we consider ourselves a humane society, is protection seemingly too much to ask for those with an extra chromosome? We appear to have forgotten the definition of this powerful six letter word.

humane
hjʊˈmeɪn/
adjective
  1. 1.
    having or showing compassion or benevolence.
    “regulations ensuring the humane treatment of animals”
    synonyms: compassionatekindkindlykind-heartedconsiderateunderstandingsympathetictolerant, civilized, goodgood-naturedgentle;

    lenientforbearingforgivingmercifulmildtenderclementbenignhumanitarianbenevolentcharitablegenerousmagnanimous;
    approachableaccessible;
    rarebenignant
    “regulations ensuring the humane treatment of animals”


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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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When every day is your birthday…

Virtually every day for the last month I have listened to the same song.

That’s not surprising you say…over Christmas the shops are filled with Slade or Paul McCartney endlessly singing the same festive tunes.

Not in our house.

Every day, almost without fail, Hazel, who is largely non-verbal and has very little language as yet, has been singing.

The same song. Over and over.

Happy Birthday

Actually, it’s goes something like this:

“Appy budday dooo yoooooo

Appy budday dooo yooooooooooo

Appy budday dooo Ayzool.

Appy budday dooo yooooooo.”

Every time the lights on the Christmas tree were switched on, we heard it.

Every time a candle was lit to freshen up the house after a meal, we heard it.

Every time a visitor called by to offer festive greetings, we heard it.

Even in the Doctor’s tinsel clad waiting room, poorly and struggling with yet another infection, we heard it.

Hazel has no idea what Christmas is all about. Not really. That will come in time. She did not write a list for Santa, or even hang up her own stocking. She had little interest in opening presents – finding it all too overwhelming, instead shuffling off to find a quieter space. Not even a morsel of Christmas fare passed her lips, as she happily ignored all food yet again, content to let a tube keep her alive.

But she knew it was special and that was enough for me.

Like her birthday, last September. Special. Not that she understands birthdays either. But she remembers being celebrated with a special song. Hazel understands being special.  Not in the way some people use the term ‘special’ either – for all children are special. With or without an extra chromosome. 

No.

She is special because she is Hazel. She is planned and purposed. She is loved and wanted – but even if she weren’t (God forbid) she would still be special. She is special because she is a human being, made in God’s image.  She is special because.

Last year I, along with many others spent time and energy campaigning for the unborn – in particular those who are found pre-natally to have Down’s syndrome. We argued that their lives are worth living. That their lives are as worthy as yours or mine.

I would be dishonest if I didn’t admit that, at times I felt crushed by the campaign. I’m sure others did too. In reality, it was the attitudes I came up against that brought me low on more than one occasion. Imagine having to justify your child’s existence – I did when a journalist asked me to explain why it was better that Hazel was alive and not an abortion statistic.

I have found it difficult to even write about these things since the campaign reached its height – around the time of Sally Phillip’s excellent documentary A World Without Down’s last October.

I’ve wanted to hide away from the reality of living in a world that is so hostile to people with Down’s syndrome. I have felt it personally. I have felt the hostility and the hatred. I have felt it for my little girl.  I have cried many tears for Hazel and the discrimination she faces from those who think our society would be better off without people like her.

We’ve kept our decorations up a little longer than usual – for Hazel. She loves them so much. And, as she sang Happy Birthday to herself this afternoon, she reached me.

Again.

So at the start of a New Year I want to celebrate my little girl with an extra chromosome.

She celebrates herself every day after all! So why shouldn’t I?

Why shouldn’t the world celebrate with her and all those like her? I will not hide away and stick to damage limitation. I will stand up and fight for her and for all those who have no voice.  When she sings the one song she knows so well, I will not correct her and tell her it’s not her birthday (even though it isn’t!) Instead, I will sing it with her, as often as she wants to.

Happy birthday Hazel – I will celebrate your very existence and that of your equally special sister each and every day!

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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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Holidays & Fountains

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Holidays. We’ll never go on one again.

At least, that’s what I tearfully said to my husband a few days after Hazel was born.

“Children with Down’s syndrome don’t cope with holidays.”

I have no idea where that particular myth came from as I’d never actually spoken to any parents of children with Down’s to find out if this was true. But I’d read it, along with a myriad of other falsehoods and generally outdated information and that was enough. I was convinced our Great British seaside holidays (never mind going abroad – that was just completely out of the question!) were now at an end.

Finito.
End of.

Except….Someone forgot to tell Hazel that she couldn’t cope with holidays.

We do have to be careful in choosing our destination. Holidays with Hazel do take more planning and there are places we wouldn’t even attempt to go to with her.

The Isle of Wight has become a firm favourite with us for a holiday destination. Its slower pace of life (set in a time warp some say) and its micro climate make it ideal for us. Throw into the mix a sea view and a hot tub (no sensory overload in a public swimming pool for Hazel) and its easy to see why this place is enough for us. A change without upheaval. Oh, and there’s a washing machine here too. Vital.

When we do venture out for a bit of sight seeing we may spend hours pouring over leaflets deciding what will work for us beforehand. Jumping in the car and seeing where you end up is rarely an option when you have a children with additional needs.

I love attraction leaflets. I could read them for hours. Pour over every single detail, looking for the catch, looking for the deal breaker. A reason why we can’t go there. I usually find it too. Inadequate changing facilities (or lack of them), children’s play areas; squealy, shrieky, shouty places that Hazel would barely last 5 minutes in. So many challenges to overcome in order to have fun, spend time together, pleasurably. They are often no pleasure at all.

But here, on the Isle of Wight, there is always something for us to do without these challenges. And yesterday we found such a place.

Fountain World

Now. I’m often a little suspicious when any attraction has the word ‘World’ in its title. I’ve clearly watched too many episodes of Peppa Pig – Potato World, or Tree World to name a few. Glorified places of ‘interest’ with very little of ‘interest’ when you go beyond the brown tourist sign.

They promise so much.

I had my reservations as soon as we drove into the near empty car park.
After paying the entrance fee (cheery attendant telling us we could go in an out as many times as we liked), we went in.
First, we had to go through Butterfly World.
It didn’t take long. Not because there wasn’t much to see – there was. Beautiful butterflies of all shapes and sizes flitted and floated around our heads. A helpful expert on hand to tell us all he knew about the life cycle of the pupae.
Eldest child’s aversion to all living creatures kicked in and she made for the exit. Head down, almost commando crawling to the door to escape, losing the plot with every leaf that moved as she went. Mr Pupae looked a little crestfallen. He’d been waiting all day for an audience.

And so we found ourselves in Fountain World.

And this is where I take issue with the title.

Fountains there were. A world of fountains? Forgive me for suggesting otherwise.

We stepped further into Fountain World, sniggering quietly to ourselves as to the absurdity of such place, and why there were only a handful of visitors, but secretly enjoying its quirkiness at the same time.

And then there was magic.

In the aptly named Italian garden, cheesily styled with fibreglass temple porticos and statues galore, was a pond. And in the pond, a fountain. A dancing, jumping, joyous fountain of delight.
Hazel loved it. As the water shot into the air so did her hands. Each jumping jet of water matched by her excited jumping body. She clapped her hands with glee at this most unexpected water fantasia.

The fountain had a variety of different moves and routines. Hazel, who cannot yet walk or talk, was transfixed. Mesmerised. She would have happily stayed there all day watching it. Fountain World was just that to her.  It was everything. It was wonderful. Glorious even. A joyful and tranquil place. Unexpectedly delightful in its quirkiness.

The cafe was empty. Most tourists had overlooked Fountain World in favour of the beach or one of the more popular tourist attractions on the Island. I get why they did that. I would have done it myself had things been different. And yet they missed out, in my view. In Hazel’s view.

I recall being afraid of another ‘world’ some years ago. It was a world I definitely didn’t want to join. Be a part of. A world that I wanted to avoid. A world that I found myself in the middle of, without asking. I would have happily driven past the brown sign to this world if I could. The Down’s syndrome world.

I won’t lie – It’s a world that has brought me more challenges, more pain and more difficulty than I had known before. Even as I began writing this post, we were thrown into a full on emergency situation here in our holiday lodge, as Hazel’s feeding tube sprang a leak and had to be changed. The threat of a hospital stay is ever present in our lives. And yet, it’s a world that has brought more meaning, purpose and joy to my life than anything I had known before.

Many expectant women today see same brown sign that I did. It’s a destination they don’t particularly want to end up at. It’s got bad reviews. There are better places to go. More attractive places, more popular destinations. And, in many ways, they are right. Of course there are. But they have been sold a lie if they think this destination has nothing to offer. In fact, they may well have just driven past the most joyful and enriching experience of their lives. All because someone said ‘It’s not worth it, don’t go there’ or because they believed the myths about bringing up a child with Down’s syndrome.

Hazel loves holidays. For a while, I believed the myths.
She has gently, consistently and patiently proved to me, over and over again, that they are just that. Myths.

Hazel has Down’s syndrome. She is not Down’s syndrome. She is Hazel.

And she loves fountains.

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