Downright Joy

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


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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 However, in older versions of the game stats are largely out of date.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


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Turned out nice again

If there’s one topic of conversation that we Brits do well it’s the weather. I wonder what on earth we would talk about if our weather was always the same. Without this subject, I fear we may never talk to our neighbours or people we meet ever again!

Picture the scene, a busy Post Office, in a suburban town in the U.K.

A queue. Oh we do those well too, queues. Usually in silence and often impatiently. Avoiding eye contact and hoping that no one invades our personal space. Unspoken rules of being British, and, if you are a visitor to these shores or have made your home here then you will have possibly been on the receiving end of one of our glares or tuts of disapproval if you dared to get any of this wrong. Please accept our apologies if this has happened to you. We don’t mean to be so rude. At least I don’t think so.

But you are not alone. My daughter, who has Down’s syndrome, hasn’t learnt those rules either. And I hope in some ways she never does. As we took our place in the queue, me standing and Hazel in her wheelchair with shiny bright pink wheels, waiting our turn, she pretty much broke every one of them.

Firstly, she cheered as we went in, hands waving frantically. Everyone turned and stared at us.

Ssssshhhhh, they said, not actually saying a word.

Secondly, she laughed. Loudly.

Giggled.

At what, I have no idea. Maybe the fact that there were lots of people all standing there saying nothing at all was very funny.  It is, if you stop and think about it.

The Post Master definitely smiled, I caught his eye from my place in the queue.

Cashier number 2 please.

Two more still in front.

A commotion behind us. The whirr of an electric wheelchair. Not pink and pretty, but cumbersome and clunky.

The silent, staring, glaring faces turned again. Then turned quickly back for fear of making eye contact with its occupant. Letter in one contorted hand, control stick in the other.

Fear.

More silence, if there is such a thing as more silence when you already have silence. Relief that they were ahead and not behind was tangible.

I moved her pink wheels to make room in the cramped waiting area for his black ones. As I did, she broke another rule. Or was it a barrier? She reached out her hand and placed it firmly on his knee. And, in a second, the rule was broken, the barrier lifted.

“Hello”, he said

“How are you?” He said, his voice as shaky as his hands.

She didn’t answer. She can’t. Yet.

But she spoke louder and more clearly than all the articulate people in the Post Office put together.

The Post Master smiled. So did the other customers. One stepped forward to help our new friend put his letter on the counter. Another turned and spoke to Hazel, admiring her pink wheels.

Silence broken. Lines of communication opened.

As we left the Post Office, our electric powered friend was already half way up the road. There was no stopping him. Though I’m sure there are plenty more barriers he will have to face in his life. As do we, but, at least for now, in her five year old world, Hazel has no idea those barriers even exist.

Turned out nice again.


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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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Love in every stitch

I am knitting.

There. I’ve admitted it. After all these years, I am learning to knit.

And I am loving it.

I’ve never been a fan, it’s fair to say. There were better things to do with my time; not that I had the time to do better things. I felt superior. That knitting was beneath me. Fanciful yet dull. Not cultured enough.

I suppose I even looked down on those who spent time and money on this hobby. Believing them and their creations to be less than.

Preferring shop bought perfection over (what I saw as) imperfect and clumsy looking.

Frills and frou frou.

I was the same with houses. Give me a modern, easy to maintain, some say characterless, property over an older one with its quirky features and creaky floorboards any day.

I didn’t see the joy.

The love in every stitch.

The story in every room.

All I knew was prejudice – towards knitting and crafting. Towards joy.

Until last week.

In a few short months I have been truly humbled by some new friends. Their love and joy for this most ancient of crafts has made me realise how much I have been missing. Hand crafted items that I once would have been disdainful of, I am coming to regard as things of beauty. Things that have the power to make my heart sing even.

Love in every stitch.

So, last week, I began to learn to knit.

It did not start well. The woman in the shop asked me if I had chosen the right size needles. Did they have the right number on them? She obviously saw my hesitation and suggested I could go back and change them if they were the wrong ones.

I just nodded. I hadn’t the faintest idea what she meant. Her next question stumped me completely.

“What are you knitting? What’s it going to be?”

Again, I had no idea.

But in a moment, across the counter, I knew it didn’t matter.

I knew that whatever I knitted would be beautiful.

Unique.

A one off.

It mattered not what it was, or how long it would take to finish – if ever.

It was mine.

I paid, stuffed the needles and a ball of wool into my bag and left the store.

Excited.

There’s a verse in the Bible that I have always loved…

You knit me together in my mother’s womb …. I am fearfully and wonderfully made.”

When my baby was born with Down’s syndrome I had many other prejudices that needed taking down. Prejudices about people with Down’s. Ideas that they were somehow less than other people.  I craved the perfection I saw in babies without an extra chromosome. I asked why my baby had been given the wrong number. I wondered what she would become. How would she turn out?

Others asked this question too.

Some asked it before she was born. They said I could forget about her and try again. Hopefully get one with the right number. For all my prejudices towards people with Down’s syndrome, this suggestion was abhorrent to me.

Five and a half years on and I know now she does not have the wrong number.

There is no such thing.

She has a different number.

That is all.

Knitted together….fearfully and wonderfully made.

And there is love in every stitch.

hazel-in-hat

With thanks to the knitting & non knitting geese in my life.

Honk honk x