Downright Joy

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

Tag Archives: #Trisomy21


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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.


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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


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No Fear

If I could go back in time, three years or a little more, and have a conversation with myself, I would say only this:

No need to be afraid.

Today is World Down Syndrome Day, 21 March 2015,

Click on the photo or the link below for our celebration of Hazel.

It’s real love.

WDSD2015