Downright Joy

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

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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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Limping

Afraid. What does the future hold? Will my children be safe?

These are questions I’ve noticed many parents are asking on social media lately. So much to be afraid of.  Acts of terror creep ever closer to home. Paris. Long awaited trips to Disneyland being viewed rather more anxiously. Life just got a whole lot more scary.

Fears.

And yet for the parent of a child with additional needs these fears are already known only too well. They have loomed large since the day they were given a diagnosis.

Afraid. What does the future hold? Will my child be safe?

Like me, they stare over their sleeping child and ponder these things. Watching them breathing deeply and securely in their cot or bed. Smiling at the way they are lying or the way they are clutching onto a favourite blanket or teddy. Thoughts so quickly turn to the future.

Who will take care of her when I am gone?

Will anyone love her – really love her as I do, when I’m gone?

Will she be bullied because she is different? Because she has Down’s syndrome?

Will she be exploited? Taken advantage of?

Who will speak kindly to her when she is anxious or sad?

Who will hold her hand or give her a hug?

It’s not uncommon for many parents of children with disabilities to even wish that they outlive their child. They cannot see a future for their child without them being there to care for them.

It’s these fears that threaten to overwhelm me. Blink fast, swallow hard fears.

But they only ever threaten me.

I’m a Christian. Completely not cool.

According to the media and especially social media, I am someone to be mocked. Often laughed at, ridiculed, criticised and increasingly silenced.

I can live with that.

I can live with that because my faith is the only thing that can calm these overwhelming fears. The media can’t. Facebook can’t, neither can Twitter. Other people can’t, though of course I take huge comfort and encouragement in the words and experiences of others on a similar journey, whether or not they share my faith. I am thankful for them and value them enormously.

But, if having faith is a crutch to lean on then I am happy to keep limping. However uncool it may be.

The Bible has two particular things to say about Hazel ‘s life. They are my crutches. Whenever those fears threaten to overwhelm me once more I bring them to mind and lean heavily on them.

Firstly that God uses the weak things of this world to shame the strong.

Hazel is weak, undoubtedly.

Down’s syndrome is often seen as weakness. A flaw. Something undesirable. Something to be got rid of. Unwanted.

Not to God. And not to me. I have already seen how Hazel’s ‘weak’ life compares to the selfish, self centred lives of many ‘stronger’ or ‘wiser’ people. She has already brought more joy into our lives in four short years than some people will bring in a lifetime. She shames many. Each and every day.

Secondly, that God has plans for her life. Plans to prosper her and not to harm her.

Hazel’s life is no accident. She was planned. She has purpose. She has a future.

This doesn’t mean there won’t be problems, or challenges. This doesn’t mean she won’t face discrimination or even hate. But it does mean that her life will matter. Her life will make a difference. Her life will be cherished and she will be loved. I believe what God says. I have to. The alternative is too overwhelming for me.

I will keep limping.

Holding tightly onto my faith.

Stamping out those fears as I go.


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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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Cot Rage

Both my children have spent their early weeks and months in a Neonatal Intensive Care Unit. These are, quite simply, extraordinary places. Premature, fragile human beings fighting for their very existence. Parents huddled next to incubators, manoeuvring themselves around the myriad of cables, monitors and alarms just to stroke a jaundiced cheek or feel the grasp of a tiny finger. Dreams and expectations of what having a baby would be like are left outside the door. Discarded, like a broken umbrella. New dreams have to be found and clung to. Hope takes on an entirely new meaning.

It’s hard to think of other places that contain quite as much emotional energy under one roof. Deeply personal conversations taking place in hushed voices in the vain hope that the family sitting at the next cot won’t hear.
Personal space is not something you can expect in a NICU. Better get used to the fact that everyone around you will soon know your pregnancy & birth story, what you ate for dinner last night and what came in the post this morning, very quickly!

For the parents of these tiny guests, the units represent a place of safety and security. For those who spend longer than a few days here they become home. Familiar. Comforting even. Routines take on a new face. Doctors rounds, 2, 3 or 4 hourly feeds. ‘Cares’ is no longer just an emotion; Aprons on, gloves at the ready. Nappies to change, tiny mouths swabbed, temperatures taken. NICU nurses become surrogate mums (or dads) to our little ones. A shoulder to cry on (frequently in my case) or someone to laugh with in the darkest of moments.

Of course, we long to be in our real homes. That is where we left the dream. That is where we can start living again. But for now, this is home. This is where we must stay, whether we like it or not. Make the best of it.

To begin with, we don’t see anyone else in the room. It’s like we are wearing blinkers.
Our baby is all that matters. Not because we don’t care about others, but because the whole terrifying experience of finding ourselves in this place is almost too much to bear.
But, after a while, we become accustomed to our surroundings. Part of the furniture even. We know all its ins and outs. We are the residents. We are here for the long haul. Don’t complain. Just get on with it. We can almost forget our initial fear and bewilderment.

So, when an angry father of a new born baby boy came into our well-ordered and familiar ward, demanding instant answers from the overworked nurses I took offence. Ignoring everyone else on the ward, he berated the nurses with his questions. How long would his son be here? Why was he here? Why couldn’t he be sent back to the post natal ward to be with his recovering mother? All reasonable questions of course, but delivered far too aggressively.
The nurses kept their cool, gently but firmly answering his persistent questions. The baby just needed a few days in NICU, nothing more. He would probably be home by the weekend.

From the seclusion of the space beside my baby’s cot, I raged. Silently of course. How dare this man come in here and create such a fuss. Could he not see that there were others besides him and his baby in the room?

No, he couldn’t.  Any more than I could on that first visit. World War three could have broken out in the next room and I wouldn’t have cared the day we arrived. My baby was all that mattered.

But shock wears off.

Didn’t he know that some of us had been here for weeks? Months even. At least his baby would be home in a few short days. Able to lead a normal life.  Mine, with her extra chromosome, faced a very different future. Home by the weekend? I should be so lucky.

Selfish and a bully.

I mocked this father each time he appeared. Inwardly. Especially the time he put his baby back onto the tilted mattress, said his goodbyes and left for a cigarette.
He smoked. He smoked!

As he left, I glanced across to the incubator. The baby’s head now where its feet should be. The nurses’ raised their eyebrows as they quickly rectified his error and turned the baby up the right way. How we laughed.

Silly man.

And yet this little baby was nothing to do with me. Just like all the others. That’s not to say I didn’t care about them. Of course I cared. It’s just that they were literally, as well as legally, none of my business. Each time the doctors did their rounds we were reminded of that fact. Parents would reluctantly trundle out of the ward to the family room, waiting their turn to speak with the doctor, so as to protect patient confidentiality. Each one impatient to return to their cot side vigil.

A NICU is a place where the close proximity of fragile human existence and parental pain cannot be ignored. It’s in your face. All the time.
And, one day, this particular father’s pain got well and truly in mine.

We sat on opposite sides of the family room. Him with his hang ups on one side and I with my opinions on the other. Never the twain shall meet. Except this wasn’t like real life. This wasn’t a library or a post office or some other public place where we could ignore each other and get on with our own lives. Normal life was suspended.
This was a NICU and we had something in common, him and me.

The doctors were doing their rounds. It was a quiet morning and we were the only parents in the room. I picked up a magazine. He spoke.
How long have you been here? He asked.
Mentally rubbing my hands with glee I answered him. Seven weeks.
He showed little reaction.
Tough isn’t it? He said.
I nodded.
My turn.
So how long do you think your little boy will be here? I asked. Of course I knew the answer but I was still trying to score points in my ridiculous game.
Not long, I hope. He answered. Then, eyes glazing over, he told me.

His wife lay recovering from a c section somewhere on the floor above. Too unwell to be with her baby. Not unusual, painful as it is, it happens.
The baby was doing ok but needed some extra support. He’d gone a funny colour after birth and the doctors wanted to keep a close eye on him.

I wasn’t prepared for what followed.

This little baby boy was his second child. He had buried his first. Just under a year ago. Sudden death*.

Unexplained. In his cot.

In those few moments alone in the waiting room I saw a completely different man from the one I had judged a day or so before. Not a selfish, arrogant man, bullying the staff and ignoring those around him. But a frightened, terrified man, scared that history was repeating itself and that he would be forced to bury a second child. A man who was trying desperately to support his wife, whose baby was not where it should be….in her arms. Again.

Instead of raging at him, silently judging him from the side of the cot, I now prayed for him, his wife and his child. Ashamed. The very least I could do.

Our time spent in NICU, was, on occasions, unbearably hard. An enormous strain on the whole family. Yet it took this man’s story to make me realise that, however tough life gets, there is always a need and usually an opportunity to reach out to others. I didn’t have a monopoly on pain or hardship back then and I still don’t now.

One of the most amazing discoveries I have made on this special needs journey is this:
The parents who have the most demands on their time in caring for their sick or disabled child are often the ones who are first to reach out to others in similar situations. They never minimise another’s pain or difficulty, though it may be less than their own. And, I am privileged to count as friends those who have even lost babies and children of their own; yet still they reach out and help me in so many ways.  Compassionate and selfless. Alert to the struggles of those around them, even though their own pain and grief goes beyond anything I have had to bear. These are the “amazing people” my GP told me I would meet, as I struggled to come to terms with Hazel’s condition back then.

After a few days, the baby was well enough to return to his mother and leave hospital.
Happy ending? I think so. I hope so.

But it’s not for me to judge.

*Saying Goodbye is a charity offering Support & Services, for anyone who has lost a baby in pregnancy, at birth or in early years. 

http://www.sayinggoodbye.org

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016


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Dream Changers

What are your dreams for this New Year?
Four years ago my dream for the New Year and my family’s future was very different to current reality.
Happily enjoying being a mother of one after an arduous wait of nearly ten years. Life was pretty much near perfect. Only one thing missing.

Another child and the curtain could be fully lifted on our longed for family production.

The scenes were written. The set was ready. Tickets were sold. Family and friends only too eager to join us for our opening night. Baby number two would complete our family and we could live out my dream. Happy family doing happy family things. This was what God intended for us, I felt sure. Setbacks and glitches…well we knew there would be some along the way. We were prepared for a few first night nerves even. After all, our first ‘pilot’ show hadn’t exactly been smooth. The main characters (mother and baby) ending up close to death in intensive care at 29 weeks pregnant whilst doctors prepared the audience (family) that the show might not go on.

Thankfully it did and despite the difficulties, the ‘show’ went onto receive rave reviews.

Nothing short of a miracle in fact.

Second time around and the performance would run smoothly. Preparation was key. Expectation was at an all time high.
Somehow though, we had unwittingly prepared a different script.

Our script began with an announcement. Baby number two is on its way! God has blessed us and we are going to be a family of four. As if being a family of three, or two or whatever was any less a blessing, but that’s the naive way I thought back then.

In order of appearance, the doctors came on just after the main players. This time everyone was prepared. Ready to avoid the complications of last time. All would be well. We were ready to go.

Break a leg.

Scene two arrived and someone threw away our script.

The Sonographer went quiet. Then she left the room. I stared at the ceiling. Alone on the bed; my husband had,at my suggestion, not taken time off work, preferring to save any leave for when we really needed it later on.

Trying to be brave. Trying not to cry.

On stage walked the cheery consultant. I knew him well from the first show. He saved my life in scene 4. He saved the show. Everything would be fine.

The smile was the same but the lines he delivered were not. Though he was gentle in his words all I heard was the uncut version.

Your baby is unlikely to survive the pregnancy.

And, if it does, it may well have serious heart problems as well as some kind of syndrome.
He rattled off the names…Edward’s, Turner’s, Noonan’s or Down’s. If I tried not to cry it was pointless.

Silently, I screamed. And the curtain came down on my dream.

6 months or so later, though it felt like a lifetime, our beautiful little girl with an extra chromosome was born. Against the odds. A new script was being written. Oh, there were many times in those early days that I wanted to revert to the original. If I’m honest, I still do sometimes. No parent wants their child to face the kind of suffering and difficulty that Hazel has sometimes had to face. We see more of the medics than we do our neighbours and we even now have our own parking permit for the Children’s Hospital!

So, naturally, I crave a better existence for her. What parent wants their child to face discrimination, stigma and rejection? Do I wish that she didn’t have Down’s Syndrome? Yes. Often at first, now only occasionally so. But what I am really longing for is for her to live in a world that doesn’t reject her, discriminate against her or believe that it would be better off without her.

Into Scene three or was it four? The curtain had lifted on a new play. It looked very unlike the old script – at times resembling more of a pantomime with the constant change in scenery, characters and plot. One moment we were booing and hissing as another wretched appointment landed on the doormat. The next we were cheering from the rafters as Hazel smiled for the first time, came through surgery or reached some other milestone. Even the ‘baddies’ – those people we didn’t particularly want to be spending time with in another therapy clinic or the operating theatre – became friends and allies…all on the same side. This script was a true variety performance but with no rehearsal; just straight onto the stage and under the glare of the bright, uncomfortable lights.

In reality the new script was no pantomime. That would be doing it a major disservice. No. It was, without question, a Love Story filled with dramatic, tense, edge of seat stuff. Heart wrenching at times yet utterly uplifting too.

This wild, beautiful, challenging and desperately vulnerable little girl captivated our hearts from the very beginning. I soon realised that her extra chromosome was as much a part of her as the smile that lit up her entire face, or the cry she made each time she wanted to be picked up from her neonatal cot. Hazel had arrived. Not a Down’s baby, though of course she was…but Hazel Joanna.

The audience began to fill up. Strangers became friends. A whole community that we previously knew nothing about took their seats in support of us,  joining us even and becoming part of the story. Our story, now in the round. became part of a production much greater than we could imagine.

Our first dream was a good one. It’s just that the script was far too limiting. Hazel, the dream changer, made certain of that.

And whilst this new dream felt, at times more like a nightmare, it has still proved to be greater and more rewarding than anything we could have imagined.

Better. Not because life is easy. The opposite is true. Daily life can be very challenging at times. Better, because Hazel has shown us there are more important places to go in our dreams. Places that include others and not exclude them. Places that show us what community really is. Places that force us to slow down and take life at a different pace. Places that cause us to take hold of what really matters and let go of what doesn’t. Places that reveal more joy than we could have ever imagined.

Of course dreams don’t always come true, I know that. But Hazel has proved that they can change and open up a new, more fulfilling reality. And, after a while, the old dream becomes redundant.

Not needed.

When Hazel was born I recall reading an article by mother of a boy with Down’s Syndrome. One thing she said stuck in my mind….that she wished that every family had a person within Down’s Syndrome in it.
At the time, I could not get my head round this idea. It made no sense. Three years on and I get it. If you don’t know someone with DS, believe me, you are the one missing out! 

DSCN4686


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Leaving The Room

The other day we went on a Magical Journey. Literally.

Nearly didn’t though. Perhaps you saw it on the news.  Around this time of year there is usually some story about a “Christmas experience” that turns out to be anything but. You know the sort of thing……

Grumpy elves in a muddy field trying to convince small children and their fee paying grown ups that the ever so slightly inebriated Santa in the sparsely decorated cabin is the real deal. A few stuffed penguins and the odd polar bear dotted around a handful of Norwegian spruce trees and there you have it.

Lapland it is not.

So when I came across this particular experience dreamt up by the designer Laurence Llewelyn Bowen, I thought it would be different. Classy even. No one that famous would surely put their name to a failure.  I fell for all it promised and booked our tickets.

Then it opened. And closed. In less than 48 hours. Social media was awash with complaint.

Smoking Santas, reindeers that bite and drunken elves were just a few of the horrors that were apparently witnessed by families on the open day. Though many of those accounts have since proved to be as mythical as the Journey itself.

There was, it seemed, very little magic to be found.

The organisers appeared on television to make amends. Or were they Elves? Difficult to tell really, both wore red faces.  Heads were hung in shame and promises made to do better. Just give us three more days they said, and it will be Magical.

So we did. And it was.

Searching for Rudi the missing reindeer. Calling his name and looking for elusive hoof prints. Buying into the museum of artefacts that proved Santa’s existence; spending time pouring over each one…fuelling the children’s excitement and building anticipation. Trailing through the makeshift forest, wondrously covered in fake snow whilst looking for fairy dust. Knowing that it was all fake, (not just the snow) but in that moment, we were in Narnia. Aslan was on the move. This was real.

I couldn’t help but notice that there were just a few people on the Magical Journey who could not see what we saw. Arms folded, they waited to be entertained at every stage. After all, that’s what we do nowadays. Pay for entertainment. Instantly.

They missed the magic.

Now I know I am easily pleased when it comes to this kind of thing. Even before I had children of my own I didn’t need much to fuel my imagination. Give me a garden and I could give you a fairy hunt. Take me to a castle and I would fight knights and dragons.

But having a child with Down’s Syndrome has taken me beyond my own imagination into a world that has to be viewed through different eyes.

Hazel causes, no.  Forces, me to pause. There is no rushing on to the next attraction. We have time to stop. Time to play. Time to appreciate. Time to notice.

We go at her pace, her speed, and, in doing so, we begin to appreciate even the smallest of details.

Very often we are late for the show, or even miss it altogether. Something happens. Sensory overload usually.

The excitable child in the toddler group who squealed in a way she didn’t understand. The supermarket tannoy call for more cashiers that frightened her, causing us to abandon our half-filled trolley and make for the exit. The music at the party that was too loud and we had to leave the room.

We have left so many rooms.

That’s when it happens. That’s when the discoveries are made.

Like finding her shadow for the first time on the wall outside; a magical new friend to dance with. Or, like sitting on a crowded train, trying hard to pacify her each time a station is announced. Dreading the upcoming tunnel only to find, once inside, that she can see herself clearly in the darkened window. There’s her friend again. Smiling back right back. Her face lights up the whole carriage. Such pleasure derived from a reflection.

Or a visit to the zoo where she resolutely refused to look at a single animal. Taking instead inordinate pleasure from lying face down on the grass and running her fingers through it over and over again. Not even a 14ft giraffe very close by could take her attention.

At home, her playroom is filled with toys and games designed to entertain, educate and thrill. Yet no toy holds her attention in the way the washing machine on a full spin cycle does.

Joy in unexpected places.

If I’m honest, I wish we didn’t have to keep leaving the room. Or the shop, or the bus or wherever it is that she can’t cope with today for whatever reason. When it happens I leave with a heavy heart. I would much prefer it if she were able to join in and be like everyone else. But she is not. And that’s ok. Because actually what I am probably feeling is a desire for me to be like everyone else. It’s mostly out of self-centred reasons that I wish for these things.  Hazel has no sense of missing out on the fun whenever we leave a room. Just a sense of relief.  Calm returns. So does Hazel’s smile. So does mine.

I am slowly learning to let Hazel be Hazel. She does not have to fit in with every activity or social situation. Oh, I know it’s important for her to try and learn to cope in social situations and that taking her out each and every time something upsets her is not always the answer.

But, sometimes, it is the only answer.

It’s ok that she spent the whole session at the toddler group playing with a door stop and not the array of carefully thought out toys in the room. She loved the doorstop.

It’s ok to stop trying to make her into who she is not. It’s ok to leave the room.  It’s more than ok.

And it can even be magical.

Hazel washing machine