Downright Joy

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


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Snowflake

My daughter is, as I write, shouting at snowflakes. Loudly. as they whirl around outside, on a bitterly cold and windy March day.

Hands raised, fingers tracing the snowflakes path as they tumble to the ground. Transforming her world. Well, the garden. And, for a little girl with Down’s syndrome who, as yet, has only a few words in her vocabulary, snowflakes make her shout!

She’s not the only one who shouts at snowflakes.

Disruption, hard work, cost.

Beautiful, intricate detail. Delightful. So exciting!

Can’t get to work. Social plans cancelled. Schools shut. Wish it would go away.

Mesmerising. Wide eyed and wondering “what is this magical show taking place outside every window?” Joyfully in the moment. This moment. Now. It’s snowing. And it’s beautiful….to her.  A Narnian landscape.

Snowflakes

Each one unique. Individual. Intricate designs. No two the same. Small, tiny even, yet, collectively, they transform the landscape.

Snowflake

A word now used to insult and/or define an entire group of people. A generation. We seem to be a society that is often intent on name calling, labeling, closing down the voices of those we disagree with or fear. Silencing them without ever trying to understand them. Holding fast to prejudiced views and opinions. Discriminating.

Beautiful words made ugly.

A society that says it is diverse, yet one that seeks to silence that which it fears or does not understand.

My daughter, who has Down’s syndrome, shouts at snowflakes. Not because she is angry with them but because she is captivated by them. Transfixed.  They are of great value to her.  She cannot take her eyes off them.

There was no snow when she was born, 6 or so years ago. Instead, the rich warmth of autumn leaves swirled around the ambulance door as nurses whisked her off into the Neo Natal Intensive care unit, her life in the balance.

Autumn colours are magnificent too. Vibrant. I wish now I had taken more time to notice them. Instead, I chose to look away and stared unblinkingly at grey skies.

Her life was fragile. Our life was disrupted. Plans cancelled. Couldn’t work. Costly. Painful.

For a while I was angry. I may have even shouted.  The words Down’s syndrome were, to me, and to my shame, ugly words. I hated them. Prejudice I didn’t know I had ran so very deep. I could barely even say them.

Until, that is, a nurse came in and said just four words to me. Four words that I so badly needed to hear but that no one (other than family) had said. Words that had been said about her older sister the moment she was born.

Hazel was nearly a week old before I heard them.

“Congratulations, she is beautiful”

Words are so powerful. Transformative. Life changing. Life enriching.

Today is World Down Syndrome Day. Today, all we really want is for the outdated and discriminatory language surrounding Down’s syndrome to change.  Language that breeds fear and uncertainty changed into language that brings hope and understanding.  Using different words. Let’s ditch the damaging discourse on Down’s syndrome. Babies, children, young people, adults with Down’s syndrome are worthy. They are of great worth, as are you and I.  They are people, not defects. They are not a ‘risk’ or a ‘problem’ or even ‘horrible’- as I recently heard of them being described by someone involved with pre-natal screening.

Change the narrative.  Down’s syndrome is not something to fear. To avoid, or get rid of.  A person with Down’s syndrome is so much more than a medical list of ‘problems’.

We miss out on the joy when we focus solely on the difference, the disruption to our plans, the cost. That one extra chromosome.

Cost, financial burden to the state….all words that have been tossed in the direction of people like me – parents of children with Down’s syndrome. As if these words have anything to do with a person’s worth?

I see a change in the landscape.

A group of mums, some of whom I am proud to know as friends, have caused a bit of a snow storm themselves this week. They have shown, in one short, beautiful (and now viral) video that “Down’s syndrome” are not ugly words. They are words of great and extraordinary worth. Words that speak of love and joy and a life worth living. These women and their unique and beautiful children are collectively transforming the landscape.

And it is a stunning landscape.

50 Mums |50 Kids | 1 Extra Chromosome

WDSD18 TS

www.youtube.com

 

 

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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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Laugh Out Loud

What makes you laugh? I mean really laugh. Out loud. Guffaw. Face-achingly so.

Slapstick humour? A pie to the face? Or a slip up on a banana skin? The sort that only happens in cartoons….except when it happened to my husband a few years ago, and I’m still laughing.

Or perhaps it’s wit. Great British sarcasm or irony. An evening on Twitter can provide an endless source of amusement, especially in the field of politics, if that’s your thing. And as for US President, Donald Trump…his surname alone provides great joy and laughter for the eight year old in my house.

For my younger daughter, Hazel, with her extra chromosome, I really don’t know what makes her laugh. All I know is, she does. Often.

Laugh. Giggle. Snort. Belly laugh.

She somehow missed the memo about suffering (you know – the one given out with the advice to pregnant women about their risk of having a baby with Down’s syndrome.) But what is she laughing at or about? I genuinely don’t know ninety percent of the time. It’s a mystery. Lately, she’s been waking up giggling. Laughing, alone, in her cot bed. At what?

No idea. But it triggers more laughter. It’s contagious. One by one, we go down with the same condition. We just don’t know why.

Often, she’ll start laughing at other random moments of the day. Really laughing. Again, I have no idea why. There are no visual clues. Nothing funny has happened. No slapstick or custard pies to be seen. Nobody has fallen over or stubbed their toe. No one has made any rude noises or said the word poo. No one has told a joke – even if they did I doubt she would understand a word of it, and our jokes aren’t usually that funny!  And, as she has very little speech, it’s not as if she can tell me what’s so funny.

Share the joke Hazel.

There are, of course, many occasions when we can see the reason for the joy.

Her older sister can be guaranteed to extract laughter from her in that special way only siblings do. The bond is tangible and strong. Clearly, her sister missed that memo…you know, the one about how the siblings will suffer.

Then there was the time recently when a dear friend came to visit and joined in with the bathtime routine. Much hilarity and joy as our friend – who just so happens to make people laugh for a living – introduced a song and a dance to the proceedings. Laughter like we’d never heard coming from the tub.  You really know how to extract the laughter from her, say I. It’s kind of what we comics do says she.

Extracting the laughter. That need, sometimes, to go after the joy. To find it, work for it and revel in it. Life is hard, we may forget to laugh and not experience its benefits.

According to one study: Laughter is a powerful antidote to stress, pain, and conflict. Nothing works faster or more dependably to bring your mind and body back into balance than a good laugh. Humour lightens your burdens, inspires hopes, connects you to others, and keeps you grounded, focused, and alert. It also helps you to release anger and be more forgiving.

In Hazel, the laughter has just been there. I haven’t had to try too hard at all, though I sometimes wish I knew what or who was extracting it! I often pray that she will be surrounded by Angels, seen and unseen. Only now, I wonder if God has assigned her to the safe keeping of the heavenly host’s comedy division – after all, someone’s making her giggle when no one else is around!

Hazel laughs. She also cries. She experiences a whole range of emotions. She knows pain and she does know a degree of suffering, I won’t deny that. In a day of laughter and giggling, like today, there has also been pain and discomfort as she went through yet another feeding tube change. She cried. I cried. How I long for the day when she no longer needs a tube in her stomach to keep her alive. This week alone she has three hospital appointments, none of which will be a walk in the park, for her or me.

Still she laughs. And we laugh with her. Far more than we ever did before she became part of our lives. Far more than we ever cry.

The risk of laughter…side splitting, face aching, snort inducing laughter is never far away. It seems Hazel is way ahead of most people without an extra chromosome on so many levels. She does joy rather well. Joy inspite of pain. Joy alongside pain. Joy triumphing over pain.

For any expectant parents who may be reading this and are faced with this risk, let me be clear. The stakes are very high. Joyously so.

It’s a risk definitely worth taking.

#dontscreenusout


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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