Downright Joy

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


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If the cap fits

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“But what do you do all day?” Is a question I am sometimes asked and, well, I don’t like to be impolite but, seeing as you asked (and even if you didn’t) I will try to answer it.

Today I went into battle. On the front line. I pushed back into enemy territory. My efforts were resisted but I persevered.  I took ground that was being strongly defended. I claimed it for my severely Dyspraxic child who needed a service that was being denied. Today I was brave, but I was scared.

Today I was a Soldier.

Today I changed a broken feeding tube, in an emergency.  I bathed an open wound and I administered yet another new medication. Today, as every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a Nurse.

Today I learnt all about Proprioception and how understanding it could really help my Dyspraxic child. But first I need to learn to say it. Today was enlightening.

Today I was a Student.

Today I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found Platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. Today was magical.

Today I was a Storyteller.

Today I gave my child a haircut at home. A trip to a hair salon too distressing for a child with sensory issues. Today my home became a salon. One with toys and television and iPads. Today I felt like I achieved the impossible.

Today I was a Hairdresser.

Today I trawled the internet. Endless articles on Down’s syndrome, on Dyspraxia, on Sensory Processing. Today I drank a lot of coffee.

Today I was a Researcher.

Today I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. Today I had fun making toys that would help my children make sense of the world around them.

Today I was an Inventor.

Today I attended another appointment to discuss the needs of my children. The sixty something appointment this year. Yes, honestly. I’ve counted. Today I was early.

Today I was an Advocate.

Today I wrote a blog highlighting the discrimination faced by those with Down’s syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome.  I tweeted my MP. Today I got angry.

Today I was a Campaigner.

Today I watched my anxious child find new confidence in an activity she had previously not coped with. Today was brilliant.

Today I was a Cheerleader.

Today I lost count of the phone calls I made, the emails I sent. Today I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. Today I despaired.

Today I was an Administrator.

Today my glass is half empty. Yesterday, it was half full. Tomorrow is a new day.

Today I am thankful for the glass.

Today I met with Trainee Doctors and told them about life with a child with Down’s syndrome. Today I busted some myths.

Today I was a Teacher.

Today I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. Today I tried hard not to cry.

Today I was a Wrestler.

Today I cradled my child as she drifted off to sleep under anaesthetic for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.  Today I could not do any work.

Today I was broken.

Today I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals. Today I thought my heart would burst.

Today I was the happiest woman alive.

I am a mother to two amazing children,  both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!

 

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Abracadabra

 

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Abracadabra

This afternoon, my 9 year old daughter rediscovered her Magic Set, a gift for her birthday some years ago. A happy hour or so followed this discovery as she relearned and performed some old tricks. Tricks made trickier by her dyspraxic brain, we none the less cheered and applauded her with “wow” and “amazing” and “how did you do that?” Ignoring a dropped card here and there or the not so slight of hand that kept revealing its secrets, we allowed ourselves to be thoroughly entertained by her enthusiasm and joy.

Magic.

We smiled as we recalled her much younger self with the same magic wand. Sent to her room for some misdemeanour or other, she slammed the door, waving her wand as she did so, shouting those magic words “abracadabra, make everything MY WAY!” Her foot stamping in time with the last two words.

In a year when she has discovered that Santa isn’t real and the tooth fairy is not to be trusted, you’d be forgiven for thinking that our house is now devoid of magic.

In the words of CS Lewis, there is a magic deeper still…..

It has nothing to do with fairies or elves, magicians or illusionists.

Before I was a mum I would imagine magical moments like this: happy parents swinging their toddler on the count of three as they walked along a path to a park. A familiar scene, but one that, in reality, never happened. Neither of our children could walk when they were toddlers. The shout it from the roof tops moment when my first born took her first steps as a 3 year old was soon eclipsed by another. The deeply personal moment she stood up at home, later that day, and whispered proudly to herself “I can walk”.

Magic. Deep Magic.

The magic happens when we least expect it. Like it did yesterday.

Yesterday, Hazel walked hand in hand with us, her parents, very slowly along a path for the first time in her life.

Nothing remarkable or magical to the untrained eye. To the non believer, there is nothing to see.

Hazel is my almost 7 year old daughter who has Down’s syndrome and cannot walk by herself. Hazel is wheelchair dependent.

Deeper magic.

And, just a few days earlier, this same magic had appeared at bath-time. Her favourite toy that blows bubbles and plays a tune had stopped working. The bubbles had run out. A regular occurrence. Usually Hazel would simply turn away and look for something else to play with. Not this time.

Magic was in the air.

She turned and looked up at me. Directly. Urgently.

Mum you need to fix this for me she said.

Except she didn’t say a word. She can’t. She does not yet have the words to tell me when something is wrong or when she wants something.

But she looked at me. For the first time in 7 years she told me what she wanted by looking at me.

Magic. Deeper magic.

I’ve been taking a break from blogging and some social media recently. Not because I don’t like it, the opposite is true. But having my head in a screen as often as I was meant I was in danger of missing the magic. I want to be fully present in these moments. They are a long time in coming and all the more magical because of that.

When a child reaches a milestone it’s always a magical moment.

When a child or person with a disability reaches a milestone, or does something they have never done before it is beyond magic.

Deeper magic.

 

“There is a magic deeper still that the witch did not know”

CS Lewis, The Lion, The Witch And The Wardrobe.

 


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The Ripple Effect

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The Ripple Effect

A letter to my daughter.

I’m sitting by the side of a lake; our home for a few, blissful July days. A pair of herons make their graceful ascent from the water, up, over the trees and out of sight. Willows stoop to meet their reflections. An abundance of Water Boatmen paddle effortlessly across the surface, making walking on water look like the most natural thing in the world.

Carp (at least I think that’s what they are…I’m no fisherman) occasionally leap out of the water making me jump (are they meant to do that?!). Disturbing the peace yet also bringing it.

The water ripples. Concentric circles reaching far and wide. Their effect is mesmerising. Tranquility resonating across the lake to each bank. Practical too; the ripples help ensure that this particular man-made lake does not become stagnant.

It’s almost 7 years since you disturbed my peaceful life. I had it all in order.
Capability Brown had expertly landscaped my dreams. My home, my family, my life.
Everything was coming up roses and all my ducks were happily in a row.

Then you arrived, with your extra chromosome.

In a flash. Like that carp leaping out of the water.

I was not prepared. My peace was disturbed. My calm, tranquil, ordered life disappeared. Or so I thought.

I saw you there, suddenly in the centre of everything. Thrashing around, fighting for breath, fighting for your very life in those first few, terrifying weeks.

A shocking moment. One that lasted much longer than it should have, I am ashamed to say. I questioned whether you should be here at all. Was this in the design?

Didn’t you take the test?” I was asked on more than one occasion. A mixture of pity and disbelief on the faces of those who asked this most insensitive of questions.

Yet nothing could have prepared me for what was to come. There is no test for that.

The ripples.

The far reaching, calming and breathtakingly beautiful ripples of your very existence.

Nothing prepared me for the joy you would bring to our lives and the lives of countless others whom you meet. The laughter you bring. The smiles you so freely give.

Nothing prepared me for the restorative air you would help me learn to breathe. Deep, satisfying, life giving oxygen. I could go to the finest health resort in Switzerland and still not breathe air of such quality.

Nothing would prepare me for the tranquility that surrounds you.
A tranquility that has nothing whatsoever to do with noise or indeed the lack of it.
How could it? You are so noisy and your life is filled with chaos! Even as I write, the natural tranquility of just being by a beautiful lake has been brutally broken. Broken by the need to perform an emergency feeding tube change on you. Yours has broken. It keeps you alive as you cannot yet eat.

My heart is racing, my hands shaking. Life is fragile and yours particularly so.

No. The tranquility that surrounds you, that you carry, is to be found by seeing the world through your eyes.

You already knew about ripples. You were born to understand their power, their beauty.
Your intelligence is unintelligible to some people. Dawkins and his like couldn’t begin to understand. They are still merely gasping for air.

I notice there are bulrushes on this lake. I’m reminded of another baby. One that in biblical times, was hidden by its heartbroken mother in a basket and placed among some bulrushes. Someone wanted that baby, along with many others, dead.

There are those who think you should not be alive. They’ve even developed a way to help detect your extra chromosome long before you are born. A test, they say, that will tell a mother all she needs to know so that you or people like you need not be born at all.

They see the disturbance, but they do not see the ripples. They have no test for them. No test for joy. No test for all that makes up a person’s life. The test they have is deficient.

And I am forever in your debt for disturbing my world and bringing me great tranquility.

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Just one of three beautiful lakes at South View Lodges, South Devon

 

 

 


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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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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.

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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.

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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.

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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!

blowing-candles-downright-joy