Downright Joy

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

Category Archives: Prenatal Testing


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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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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.


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Catching My Breath

I have just said goodbye to a cot.
The charity collector took it away. As I closed the front door, I had one of those ‘catch your breath‘ moments. The kind that appear from nowhere, sending you reeling, momentarily.

This was not any cot. If, indeed, there is such a thing. For six years it’s been part of our lives.

Our cot.

It’s not that I want my children to remain as infants. Not at all. I celebrate every part of their growing up. I embrace each stage and marvel at how amazing this gift of life can be.

No. That’s not why I catch my breath and am standing still for a moment.

It’s because it was ever even here at all.

Ten years of waiting for a cot.

Ten years of longing for the need to buy one.

Ten years of a spare room. Guest room. Store room. A whatever we want to dump inside it room.

Ten years of an empty room.

So many empty rooms in so many homes.
Ours was not unique.

Rooms that lie empty, hearts that are waiting.

Or breaking.

Empty for so many reasons.
Heart-rending reasons far greater than our own sadness.
Rooms that had welcomed a cot. For a time. Then, without warning, the cot had gone.
Unexplained, perhaps. Or ‘simply’ the fragility of human life was to blame. Devastating either way.

Rooms that were ready and waiting with a cot; but ultimately it was not needed. Even though the script had said it was.

The heartbeat could no longer be found.

Often small and insignificant, these rooms contain so much more than any other room in a house. Even the empty ones. Especially the empty ones. These rooms are containers of dreams. Dreams that are alive as well as dreams that have ended. Crushed. Hopes for the future, memories of the past; both cherished and painful.

But then it came.

Assembled, ready and waiting.

The room was no longer empty.

And so the first occupant moved in. A delayed start. She almost didn’t make it. The cot was very nearly not needed. For a few days we wondered if the room would remain empty. Perhaps it was not meant to be.

She had other ideas. The room was hers. So was the cot. As she lay in the cot for the first time, some eight months after she was born, I could not have wished for a more perfect moment. The cot. The delicate mobile turning gently overhead. Mesmerising us both with its sleepy lullaby. The room. Her room. Her cot.

And, if rooms had dreams, then this was surely one of the best.

The first occupant moved out. The cot redundant.
For a time.
Then the second occupant took her place in the cot.
A coveted place. A fought for place.
A place that others suggested I should deny her.
A place that I would be better off not giving to her. According to some.
A place for the elite.The healthy.Those who can contribute more to society. Apparently.
A place that for whom 92% of those found with a chromosomal addition will never be granted.

There were no instructions on the cot as to what kind of occupant it should have.

Healthy or otherwise. It made no distinction.

All welcome.

Her cot.

And now it’s gone. Too small for a good night’s sleep.
The cot has a new empty room to fill. Somewhere.

COT (noun) Carrier of all things precious.


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A Test

Is there a test for you?

Is there a test to tell me how much joy you will bring?

Is there a test to tell me how much you will make me laugh?

Is there a test to tell me how proud I will be when you hit each milestone?

Is there a test that tells me how much you will look and sound like your sister?

Is there a test to tell me how much you will make complete strangers smile?

Is there a test to tell me how privileged it feels to be part of this new community?

Is there a test to tell me how much you will change my life for the better?

Is there a test to tell me how cute you look with your hair in bows?

Is there a test to tell me how you will show empathy to those around you who are sad?

Is there a test to tell me how much you will overwhelm me with your love?

Is there a test to tell me how much I miss you when I am away from you?

Is there a test to tell me how much fun you will derive from watching the washing machine on its spin cycle?

Is there a test to tell me how many incredible new friends I am going to make because of you?

Is there a test to tell me how much you will adore your sister and how much she adores you?

Is there a test to tell me how much pleasure you will have from swinging on your shiny blue swing?

Is there a test to tell me how fiercely proud I will be of you each time we attend yet another hospital appointment?

Is there a test to tell me how many songs you will learn to love and sing along to?

Is there a test to tell me how good it feels to take our busy, hectic lives at a slower, less frenetic pace?

Is there a test to tell me how we will lead happy and fulfilling lives, you and me?

Is there a test to tell me how much we will learn to appreciate simplicity?

Is there a test to tell me how you will want to follow your own agenda in life?

Is there a test to tell me how you will have your own feelings, emotions, desires, longings, hopes and dreams?

Is there a test for you?

 

Yes, there is a test* but it’s for you.

A test more advanced than ever before.

A test that poses no risk – for you.

A test that will tell you I have Down’s syndrome.

A test that will tell you all you need to know.

Apparently.

Yes there’s a test.

You can take it if you like.

No one is suggesting you can’t.

But it’s not a test for me.

*A new blood test  (NIPT) is about to be offered on the NHS to women to screen for Down’s syndrome and other genetic conditions. It is being hailed as a major advance. Many people in the Down’s syndrome community and beyond are deeply worried & saddened by this news – coming so soon after we celebrated World Down Syndrome Day and all the achievements of people living with the condition. A test that is meant to give women a ‘choice’ – yet it badly lets them down as it tells them so so little. This is not an informed choice.

This is not choice.

 

Hazel in sensory room black and white