Downright Joy

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

Category Archives: Trisomy 21


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Just do it

Just do it.

Or so we were told by a famous sports company back in the day. Whatever ‘it’ was.

If there’s one lesson I’ve learnt since having child with additional needs it’s that we don’t just do anything.

There’s the big stuff. Learning to sit, crawl, stand, walk, talk, and in Hazel’s case especially, learning to feed. We follow a different time-scale to most.

I have an early, painful memory of being handed Hazel’s little red book by a well -meaning nurse, only for her to return shortly afterwards and abruptly pull out the growth charts, replacing them with a special set – exclusively for children with Down’s syndrome.

“You won’t be needing those, you need these.”

My already fragile and hurt feelings were then compounded by a visit from the audiologist who was doing the rounds in the tiny NICU room we were in. I overheard her speech as she went from cot to cot, parent to parent, explaining the routine hearing test their babies would soon be having and how they would probably have nothing to worry about.

Then she came to me.

The tilt of her head did nothing to prepare me for her words. Delivered with a gentle brutality as to send me reeling.

“Of course, your baby might not pass this test”.

I wasn’t prepared. I wasn’t ready to be different.

Deep deep breaths.

Then there’s the smaller stuff that having a child with complex needs means…so that we don’t “just do it”…

Going to the park. Getting a babysitter and going out for an evening. We need a nurse for that.

Dropping in on friends or taking a day trip. The cinema, theatre or pantomime, zoos, farm parks, play areas. Even a simple picnic in the sunshine. Concerns about sensory issues and how Hazel will react.  Changing facilities (or lack of them); all these factors add up and quite honestly often put us off setting foot outside out home.

Hazel’s feeding equipment, routines and reactions make these things harder. Not impossible, but harder.

Even the things we do “do” take far more planning than we would like.

Going to Church, a trip round the supermarket, a children’s party, lunch with friends or family.

Sometimes it’s easier not to even attempt these things.

And, if I could change this, I would. In a flash. Of course I would. Who wouldn’t?

The truth is we can do many of these things, but the word “just” has to be firmly kicked into the long grass.

And that is absolutely ok.

When you “just do” something you may miss the complexities of how it is done. You may miss the joys of achieving the seemingly impossible. You may take it for granted.

But, when you finally “do it”, do the very thing that is so hard for you to do, however easy it might be for others, then the sense of achievement is often beyond measure. The appreciation for what might be a simple pleasure is second to none.

It’s in those moments that my heart sings.

Today held one such moment.

Hazel doesn’t eat. She is 100% tube fed.

We try. We try hard to help her to learn. To help her to want to eat. We play, we have fun with food. We get messy.

In school it’s called “Food is fun”.

But it is hard. So so hard.

 Hard when the walls, ceiling and anyone else sitting at the table is covered in whatever food Hazel has been “playing but not eating” with. Today it was orange. The colour, that is.

Pureed carrot and sweet potato. The clean-up took three times as long as the ‘meal’. It even reached the television which was quite a feat considering that’s in another room entirely.

Ah but surely this is quite usual for a child learning to eat, you may think. It’s a phase.

Yes.  It just doesn’t usually last four years and counting.

We clean up, with a heavy heart and an unspoken envy of families where children just pick up a spoon and eat; or who can go off out into the sun with a picnic whenever the mood takes them.

But not today.

Today my heart sang.

It sang at the smiles, laughter and joy Hazel exuded in her state of orangeyness. It sang as she giggled throughout lunchtime, happy to be with us at the table, enjoying the moment and being part of our family. And it sang because, in all the laughter, Hazel actually took two spoonfuls of the vegetable medley in her mouth!

Food really is fun!

So we will continue to embrace the mess. Savouring, relishing in and enjoying the milestones, or even just the stepping stones along the way.

Golden moments in time that are hard fought for.

One day we will picnic together, all four of us.

But I don’t really ever want to “just do” anything.

Downright Joy 2


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Brush with joy!

A trip to the dentist can be stressful for most people.

A trip to the dentist for a child is something that takes careful planning – until they get used to it at least. With my eldest child this meant watching a YouTube episode of Tots TV – the one where they go to the dentist – as well as observing mummy’s teeth being scrutinised by our lovely dentist before her turn to sit in the chair.

” It’s very dirty inside mummy’s mouth” being the only observation my 5 year old made – and I was in no position to argue, mouth wide open, mid-scale and polish.

And, a trip to the dentist for a child with additional needs can be a different experience altogether.  Powers of reasoning are nil or virtually non-existent. The best that can be hoped for, on the first few visits, is that the child gets used to the clinic. Actually, this is the easy part, Hazel loves visiting clinics and hospitals. She hasn’t had much choice in the matter and often comes away with more than she went in – usually a teddy or a toy if it’s been particularly traumatic, a sticker if less so.

Then there’s the chair, the shiny bright light and the dentist. Oh and the dental nurse. However friendly they may be, it’s still an enormous ask for Hazel to let them anywhere near her mouth. As a child who is 100% tube fed, Hazel has more reasons than most not to open her mouth. Oral feeding is a huge challenge for her and us, and, although we believe she will learn to eat eventually, it’s one step at a time. Hazel knows all too well that if something is supposed to go in her mouth (i.e. food, drink or a toothbrush) then it is to be avoided at all costs! Paint, glue or sand, however, can be consumed in vast quantities. At least, that’s what Hazel thinks. When it comes to feeding, or in this case a dental examination, you may smile all you like at her, play peekaboo or whatever. She ain’t going to open wide for anyone!

Until today.

All credit to the dental team we saw. Not our family dentist, but an NHS clinic that specialises in treating patients with additional needs. And boy, did their training pay off!

It started well. Smiles and “hellos” all round from Hazel to everyone and anyone in the waiting room – as well as to the staff standing in doorways as she trundled along in her wheelchair to the examination room.

The dentist and her nurse got the joy treatment too. The dentist and Hazel soon made friends….the inflated surgical glove trick was hilarious.

Then came the stand-off.

No amount of “tickle-tickle” or “look at the pretty light” would cut it. Hazel shut up shop. Jaws clamped together. Prising them open? A foolish notion that was never going to be an option. I valued my fingers as did the dentist.

We changed position. Taking Hazel out of her wheelchair and sitting her on my lap as I lay back in the dreaded chair. Hazel relaxed a little, presumably thinking her ordeal was over and we were merely getting comfortable. She began to “chatter” in her own way. Not many recognisable words to the untrained ear but I knew it was a song she loved. Her most favourite song in the world. Ever.

Happy Birthday.

The dentist and her nurse took their cue.  And, as if on repeat, they sang Happy Birthday to Hazel. Over and over again. And Hazel lay on top of me virtually still (though the arm lock I had her in, not to mention the leg restraint from the smiley nurse may have had something to do with it!)

Mesmerised by their harmonious singing.

The dentist saw all she needed to. Though I confess I felt a little stab of guilt that it wasn’t actually Hazel’s birthday and that I might just be adding to her confusion by using the song out of context. However, the end justified the means.

Advice and Disney sticker dispensed and we were on our way. The dentist recording in her notes that Happy Birthday might well do the trick again next time.

And, as we left, the dentist and her nurse told us they’d had a challenging day in the land of special needs dentistry, but that Hazel had been a delight to finish it with. Smiles all round.

Just another day in the life of our family and not without its challenges as she has been unwell but Hazel still manages to throw a little joy bomb* into the lives of the people she meets.

 

*Joy bomb – a term I have unashamedly stolen from another mum of a child with DS. If ever there was an expression to sum Hazel up it’s this one!


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Turn Back The Clock

 

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

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

It never is.

I have dandelions growing in my conservatory roof.

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

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

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

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

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

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

Fear.

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

Fearful.

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

I was afraid of the dandelion.

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

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

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

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

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

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

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

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

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

It deserves it.

The dandelion makes me smile.

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Duck Life

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

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

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

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

You know the rest.

Quack Quack Quack.

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

Over the edge.

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

Gone.

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

Mummy you have to get it back.

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

Daddy. You have to.

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

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

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

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

Sometimes we forget what matters.

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

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

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

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

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

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

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

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

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

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

Her persistence sometimes drives me to distraction.

I thank God that it does.


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Possibly maybe…

Awareness days, it appears, seem to come around literally on a daily basis (‘scuse the pun).

I discovered, to my amusement, that there is even a dedicated website to them where you can find out what’s coming next. This month alone has seen the International Day of Happiness, World Oral Health Day, National Butchers Week, and my particular favourite, National Bed Month. Though celebrating this may have to wait as Hazel’s nocturnal adventures have put paid to any hope of even a single night’s sleep, let alone a month!

So tomorrow, 21 March, is World Down Syndrome Day. Just another one, you may say.

Yes. And no.

Raising awareness of a condition or syndrome in order to help the people who live with it can only be positive.  And I am honoured to be able to add my voice to the thousands of others who will shout, cheer, and sport their stripy, spotty, psychedelic socks – literally letting their feet do the talking. Shouting as loud as we can that an extra chromosome is not to be feared. It is to be accepted, included, loved and cherished. It is life changing, of course. We wouldn’t deny that. We won’t pretend there aren’t challenges. Heartaches and difficulties. Why else would we need an awareness day if not? But that is life whether we like it or not. We want the world to know that having Down’s syndrome is life changing, but almost always for the better! We want to celebrate the truth about our children, brothers, sisters, aunts, uncles, friends who happen to have an extra chromosome. We want to celebrate our humanity. 

Yet as we celebrate, we know that there are those who actively want to raise awareness of the condition in another way. Their awareness campaign is also positive. It’s more softly spoken than ours, more gentle and maybe more appealing. It promises to bring comfort, reduce anxiety, and relieve stress. Good, good, good!  It says it can offer affordable and reliable help. Oh this is good too. This is what women/couples need. Choice. Yes, absolutely. Choice is good. This awareness campaign has a number of different names. Some rather clinical like NIPT (Non Invasive Prenatal Testing) or the more pleasant sounding ‘Harmony’ test. Suggesting something melodious, easy on the ear and an overwhelmingly positive experience for the participant. 

I’m convinced.

So why am I also concerned about this other awareness campaign?

Well, it’s back to that word ‘choice’. The advocates for this campaign, this test, tell us that it’s all about choice. Choice for the woman/and her husband or partner as to whether or not they continue with their pregnancy. Choice is a good thing, they say. They are right.

However, choice is also a word that is often then forced down the throat of anyone who dares to suggest this test is not helpful – in it’s current form. And yet, never has the word choice meant so little to these people. It’s a choice that has been boxed in, pinned down and tied to the railings of fear and outdated information. It’s no choice. It’s bordering on a lie.

And, in the vast majority of UK hospitals and clinics, this is the choice that is offered. An uninformed and misguided one. Instead, information about Down’s syndrome is largely handed out in a very negative and fearful way. Even the test itself plays on the fears of the pregnant woman by telling her it can accurately identify this most feared of conditions. It tells her that Down’s is something to be afraid of, very afraid.  That’s not choice, that’s scaremongering. That’s fear. That’s not fair – to anyone, especially not the parents.

So allow me to change the word, if you will. But let’s do this quietly, without anyone really noticing. Ssshhhh. Don’t tell.

A synonym to ‘choice’ is ‘possibility’. Such positive word isn’t it? And that’s why we celebrate World Down Syndrome Day, each and every year.

The possibility.

The possibility that a person who has Down’s syndrome can bring so much to our lives. The possibility that we will find more joy than we ever thought imaginable by bringing them into our lives and watching them thrive. The possibility that having an extra chromosome may not be the end of the world, as we have been led to believe. The possibility that our lives can even change for the better because of Down’s syndrome. The possibility that people with Down’s syndrome can and do thrive, enjoy life, contribute to society and have as much right to a life as you or I.

The possibility that our common humanity is crying out for us to welcome people with disabilities, not try and eradicate them. Wouldn’t it be so much better if women were offered possibilities rather than choice? Choice limits. Possibilities widen. 

Possibly, maybe, we can make a change.  

One word at a time. Ssshhh.

Celebrating World Down Syndrome Day 2016

Earlier post “A Test” now with pictures…..

A Test


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Priceless

Four and a half years ago my doctor came to visit me after Hazel was born. We had not long come home from hospital, after nearly two months in NICU.

I was struggling to cope outside the safe, comforting environment that such places offer – particularly if you are there for any length of time as we were.

I loved her beyond words and yet I struggled to accept her condition. I had taken to my bed, exhausted; emotionally and physically. I was unable to cope with all that had happened. Unable to accept my baby girl had Down’s syndrome.

I did not want to join the club.

The Down’s family. That family with a kid with Down’s. The Down’s girl. Disabled. Special Needs. I imagined the conversations people would have about us.

Labelled. Given a badge. Lifetime membership. I didn’t ask to join. I certainly didn’t want to join.

“But,” he said.

“You will meet some amazing people and it will be an incredible journey”, he said.

How did he know? How could he possibly know that?

He knew.

And now I know it too. I am ashamed to think that I thought my life would be better off outside of this club.

This club is simply full of amazing people. People whose lives have also been turned upside down because of an extra chromosome or some other disability or condition. Like us, these people have had to face heartbreak and pain as they watch their child go through yet another operation or procedure. Many have had to do battle with an education system that puts no end of obstacles in their child’s way. They have fought tooth and nail to ensure their child be allowed to ‘thrive’ at school and not simply just ‘cope’.

These amazing people also include NICU Nurses, Respite Nurses, Community Nurses, Portage workers, Music therapists, Speech therapists, Physiotherapists, Occupational therapists, SENDCOs, Teachers, Teaching Assistants, Head Teachers, Surgeons, Doctors, Paediatricians and Practice Nurses…the list goes on. These are people who fight our corner and will go the extra mile every time for our children. They get it. They understand. They don’t say ‘computer says no.’ They have helped both my children, myself and my husband in immeasurable ways and I am eternally grateful to them. Then there are the amazing people in our circle of friends, neighbours, church, family. Truly amazing.

But most humbling of all, included in these amazing people (most of whom I would probably never have met if it weren’t for Trisomy 21) are mums and dads who have paid the highest price for their love and sadly, tragically, lost their little ones. Yet still they reach out to me and offer me their support. They have also shown me how to live, love and laugh through the toughest of challenges.

More recently, this club has included a family who have already shown, in just a few months, more determination, more resilience, more strength than I have had in five years. Week after week, month after month, they face uncertainty, separation and great anxiety as their baby girl battles on in NICU and now PICU. Countless operations already under her belt and her fight goes on.

They could have opted out so easily. And, at some point in the pregnancy, fairly early on, it was assumed they would. At least by some in the medical profession. After all, according to statistics, it’s a club no one wants to join – isn’t it?

Instead, they chose life.

They also chose difficulty, pain, heartbreak, anguish.

Ultimately they chose love.

And that’s what will get them through. They have gone beyond the pain and the difficulty and grasped hold of a love that is stronger than all the rubbish. A love that says their child has as much right to life as anyone else. A love that says they will never stop fighting for her, believing in her, delighting in her.

They are without question amongst the amazing people my GP told me I would meet.

I didn’t believe him, but he was so right.

And I am glad I joined this club and got to meet them all.

So thank you – to each and every one of you for being part of this incredible journey. You are all amazing. The world is by far a better place for all who are born with an extra chromosome and for people like you.

I love this quote from Archbishop Chaput:

“These children…..are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect and ennoble these special children is worth it because they’re a pathway to real hope and real joy”

For Darla, 

keep fighting

keep wriggling

keep joy giving

Priceless x


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Keep Britain tidy

I’m rubbish.

Rubbish at recycling that is.

I really should try harder, do better.

After all, we have a wealth of recycling facilities to hand. Colourful plastic boxes stacked up by my side gate. Cardboard, glass, plastic bottles, food waste, garden waste can all be dealt with. And, as if that wasn’t enough, a short drive takes me to a clothing bank which sits next to a shoe bank, which sits next to a paper bank.

I really need never throw anything away. Everything has its value, even rubbish.

Recycle, recycle, recycle.

Our planet depends on it. Good for the environment. Good for mankind.

Necessary to our survival.

Do it do it do it. 

That’s the message that is rightly drummed into us. Into our children. A world apart from my upbringing when the only thing that was recycled were milk bottles. Oh and Corona bottles, if you could afford them. 10p back in return wasn’t it?

I have a very large bin. Because of Hazel’s medical equipment it is larger than the average family wheelie bin. I don’t always have time to sort the rubbish. I know I should but I don’t. My bin swallows it all up. Gone. In an instant. I forget about it.

Shame on me.

But I guess there will be a consequence – if not directly for me then for the planet. Further down the line. Of course there will. I try not to think about it.

In our recycling obsessed culture, I am rightly looked down on for throwing away my ‘rubbish’. That’s not rubbish, they say. That is of value. It is worthy to be kept. Not trashed. They are correct.

And yet this same society has also deemed what is rubbish and what is not when it comes to people. Life.

90% of babies (found prenatally to have Down’s syndrome), foetuses, cells, call them what you like are deemed rubbish.

Not fit for purpose.

I’m sorry, they say. Just a bunch of cells they say. A foetus; and a faulty one at that. Not important. It won’t amount to much. Too costly. Bin it. Forget about it. Save yourself the trouble. It’s your right. Even if it’s just about to be born, they say, we can deal with it. (Yes really). Try again.

There is nothing more precious than life itself.

So why are so many people wanting to trash it? Chuck in the bin, forget about it, move on.

Keep Britain tidy.

It is beyond painful to acknowledge that there are many many people who would rather Hazel, and others like her, didn’t exist. They would rather she had gone in the bin. Incinerated. They say her life is of no value. Who made them judge of this?

And, with a new non-invasive pre-natal test (NIPT) now available on the NHS, bin day can come around even sooner.

But I guess there will be a consequence – if not directly for them, then for humanity. Further down the line. Of course there will. But they will not think about it.

Simple Definition of humanity

  • :the quality or state of being human
  • :the quality or state of being kind to other people or to animals
  • :all people
    Merriam Webster dictionary. 


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Gently Weeping….

Last week a Twitter campaign was launched in America by three women who encouraged other women to ‘Shout Your Abortion’.

The aim of the campaign is to help end the shame and stigma surrounding abortion. Many women have been sharing their stories under the hashtag #shoutyourabortion and, yet again, opinion is fiercely divided.

Well forgive me for not shouting.

Instead, if it’s all the same to you, I’ll weep.

I’ll weep for so many reasons, but I won’t shout. I’ve tried that and it doesn’t work. Shouting alienates, hurts and often offends. Shouting in celebration is fine if everyone is at the same party. But there are many on BOTH sides of the debate who find the subject of abortion extremely hard to shout about. They also weep.

Like the young woman I heard about recently who wept for her aborted baby. She made a choice. She regretted it. She now struggles with guilt and loss. She weeps and I weep for her. She needs understanding and acceptance, not judgement or finger-pointing from those of us who think there is a better way. She does not want to shout out her abortion. She is hurting. Deeply.

Or my friend who longs for a child, but can’t have one and is now considering adoption. It breaks her heart like it used to break mine when she hears of another unwanted pregnancy ending so abruptly. She weeps. She respects their choice, but she weeps all the same. She does not shout.

Or like the trainee midwife who told me she wept over the aborted twins, left in a bucket ready for disposal in the sluice. Whilst, in another hospital NICU, another set of twins were fighting for survival, aided by latest the medical technology. One set was wanted, the other was not. Choice.

And I will weep for the 92% of babies found prenatally to have an extra chromosome who don’t ever get the chance to bring the kind of joy into the lives of their families that my daughter has brought us. I will weep for their parents and grandparents. They will never know what they have lost or chosen not to have. But I will still respect their choice.  I will never shout at them or judge them for making it as I know how tough and scary it is when they are told their unborn child has Down’s. I understand their fears because I felt them myself. But I will still weep.

I will weep for myself and my daughter as I recall being offered an abortion right up until the moment of birth if I so chose. I weep for the lack of value placed on her life by our society.

I will weep for the women who think that this campaign is somehow a celebration of women’s rights. They are not helping the women that I know who have been deeply affected by this issue. Shouting is not doing anything to alleviate their shame, their suffering.

And I will also weep for the damage that has been done by those who lack compassion for women faced with this decision. I am deeply ashamed of the way they have been treated.

I will weep for those women who feel they have no choice. It’s rarely a black and white issue. Complex situations, heartbreaking decisions. No winners. No victory parades. Mostly just pain.

So shout about it if you must, but allow me and others the dignity of holding this issue a little more tenderly. Allow us to gently weep, not shout. Allow us to talk these things through and find a way to help not hurt. Allow us to find compassion – both for the babies that are seen as so utterly disposable and for the women who find themselves facing this choice in the first place.

#shoutyourcompassion instead.


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Turtles

Shopping lists and signing for deliveries has been the extent of my writing achievements lately.

Weeks of Hazel’s poor health and the sudden serious illness and subsequent loss of one of my dearest friends has stopped me in my tracks. And, though the words have not come so easily, I have at least had some time away to stop and reflect.

Last week we found ourselves on an almost empty beach, having arrived late in the day. The sun was casting long shadows across the beach and the sand was still warm underfoot.

Hazel loves the sand. Did I say she loves the sand? She LOVES it!

The moment we placed her down on the picnic blanket she was off. At speed.

For a child that cannot walk or even stand unaided this was a sight to behold as she bottom shuffled away across the beach. Arms raised as she went; chasing after the long shadow her tiny frame was making in the evening sun.

Have you ever seen the tracks that are made in the sand by baby turtles as they head for the sea? With all their might they propel themselves forward, their little bodies longing to be in the water where they swim freely. A trail of wavy lines in the sand; evidence of their struggle and determination to reach their destination.

Hazel left similar tracks as she crossed the sand.

Before we arrived at the beach we had been in a children’s play area.

I generally hate play areas.

Mostly because they are a reminder to me of what both my children can’t do. My eldest has her own physical struggles with hypermobility. Play equipment has been a huge challenge for her, not least because most of her friends can use it with ease.  In Hazel’s case it is often simply inaccessible. Though some playgrounds are more disabled friendly than others, largely their equipment is off limits to her.

Yet here, in the sand, Hazel had freedom. She was not hindered in any way. It didn’t matter that she could not run or walk or even stand up on that beach. Hazel took enormous pleasure from what she could do, from all she could enjoy in her own unique way. She didn’t need toys. A bucket and spade was of no interest to her. The feeling of the sand in her fingers and toes was enough to keep her attention – for hours! She did not tell us how much she was enjoying herself. She can’t do that – at least not verbally. But the joy on her face and the fact she did not turn back for reassurance told us all we needed to know. Hazel was happy. She had all she needed.

Hazel does not eat food. She is tube fed. Food holds no interest for her – yet. But sand….sand would go into her mouth quite happily. And, by the time we left the beach later that evening, she was literally covered from head to foot. Almost camouflaged.

The turtles eventually reach their destination, though it is a perilous journey, full of struggle. They don’t give up. And, once there, they swim freely.

Hazel will eventually reach her destination. She will eventually walk, she will eventually eat. She will eventually talk – even this week she had made advances with this. I, on the other hand, have felt like giving up recently. Too many sadnesses and difficulties to face. I haven’t wanted to keep going. Yet Hazel, as ever, is my little joy giver. It’s hard to stay sad when she is around. And she teaches me so much about perseverance and courage. Hazel doesn’t give up. She chooses joy and is content with simple pleasures.

My dear, precious friend, Vicky, for whom I, and so many others, now grieve, made it across the sand. She reached her destination – far sooner than any of us would have wanted or expected. She knew where she was going and lived her life in the light of it; constantly urging others to make their lives count. Her faith in God permeated every part of her life. Heaven was so real to her, and, when the time came, I don’t think she was afraid to go there. The tracks she has left are permanent ones. Life changing even. I thank God for her, but I miss her so very much.

Hazel is a little further across the sand this week. And so am I.

20150731_174029

In memory of Vicky Taylor, who made every second of her one precious life count.

Miss you so very much, but I know you’re having a ball x

Vicky Taylor photo


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Labelled

Charlotte Elizabeth Diana.

And so we had a name. The eagerly awaited announcement following the birth of the new Princess was fuelled by much speculation and guessing. Not being overly fond of the Royal Family I didn’t particularly join in, though neither was I anti all the fuss either. Names are important. Hugely so.

Up until the announcement the Princess had simply been referred to as the Royal Baby.  Nothing wrong with that.  We all know who people are talking about when they use that term. She is, after all, a Royal Baby.
Or is she? Does that name really define her?
In part it does. But only in part. It’s a label. It does not define who she is. Without wishing to sound disrespectful… she is Charlotte. Princess Charlotte of Cambridge, to afford her the title she has been born with, but she is still Charlotte. Whilst her life will be undoubtedly be influenced by all that she has been born into, it still will not define her. She is Charlotte first and foremost.

Royal Baby is a label she will carry until it changes into the next label; Royal Toddler, Royal Child, Royal Teen until eventually she will ‘simply’ be Princess Charlotte of Cambridge. Her entire life will be marked out by a label. Whether she likes it or not.

It’s a label that is used to set her apart. A label that tells us she is different from the rest of us and should be treated differently.

It’s a label that carries both privilege and burden.

Hazel has a label. It’s one we try hard to lose.
It’s a label that I used to use myself. About other people. Before I had Hazel. Before I knew how hurtful it could be. I didn’t mean to.

Already, in her short life, she has been labelled.

The Down’s baby.

The Down’s girl.

On (thankfully) rare occasions, it’s a label that has extended to the rest of our family.

That’s the Down’s family.

That’s the girl with the Down’s sister.

It’s a label that is used to set her apart. A label that tells us she is different from the rest of us and should be treated differently.

For the pregnant woman it’s a label that ensures swift and unquestioned access to an abortion clinic, if she so desires. It tells her all she needs to know. It tells her to be afraid. It tells that this is the worst thing. It speaks fear over her life, over her hopes and dreams. It tells lies to her. It does not tell her the whole story. It lets her down so badly.

It’s a label that we will fight to lose, though I am NOT embarrassed by it. I simply question why it is needed. I question why society wishes to set her apart? As if her extra chromosome was all that mattered. It isn’t. What are we so afraid of?

Having said that, I am aware of some people who desire a label.  The mother of the autistic child who so desperately wants others to understand why they behave in the way they do. Tired of judgemental looks and ‘tuts’ as they do battle with their sensory overloaded child to get round the supermarket or eat dinner in a restaurant. Not all labels are bad. It’s how they are used that’s the problem.

This week Hazel has learnt to say her own name.

Hazel

She delights in looking into the mirror and repeating it, over and over again.

Hazel  Hazel  Hazel

We have spent the last three and a half years teaching her what her name is.
It’s the only ‘label’ she knows. Well, that and ‘pickle pants’! I look forward to the day when I tell her what her name means and why we chose it. Hazel means ‘protected by God’. We chose it before we knew she had Down’s syndrome.

I sometimes take a deep breath when I think about the future. I worry about the day Hazel becomes aware that society has given her another name; a label. I worry for her sister that others will use this label as an insult or a put down.  She doesn’t see the label. She sees her sister. She sees Hazel.

Whilst Hazel’s life has, is and will continue to be affected by her extra chromosome, it still will not define her. She is Hazel first and foremost.

She just happens to have Down’s syndrome.

Let’s lose these unhelpful labels. Whether they are a burden or a privilege to carry they do not define anyone.

Person first. Always.

Lose the Label Campaign Hazel

We were privileged to take part in the Lose the Label campaign. Promoting Person First language the campaign features people with Down Syndrome of all ages, all cultures, from all around the world.