Downright Joy

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

Category Archives: Abortion


by 4 Comments

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


by 2 Comments

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. 


by 2 Comments

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.