Downright Joy

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


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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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Now and Then

Then

Then was four years ago. A sunny April afternoon as I lay on a hospital bed staring at the ceiling; left alone whilst the Sonographer called for a second opinion.

Then was the moment the Consultant said, I’m sorry, but your baby probably won’t survive this pregnancy.

Then was the moment your dad and I sat crying in the hospital car park, admitting our fears to each other. We weren’t cut out for this.

Then was the day you were born, against the odds.

Then was the moment your dad plucked up the courage and asked the midwife to take a closer look at your face. Your almond shaped eyes. Your misshapen head. These were the only markers; your little hand did not give a clue, it was the same as mine.

Then was when the doctor came and took blood “to confirm what we suspect”. No one said what they suspected. They didn’t have to.

Then was the moment a midwife gave up her break to bring me a Bible.

Then was the moment she prayed over you, just like she did your sister a couple of years earlier.

Then was the moment she told me that you were planned and purposed by God. She told me you were fearfully and wonderfully made.

Then was the moment I fell in love with you as I held you, lying on the bed in a hospital lift.

Then were the few hours I spent lying next to you, filled with overwhelming love for you.

Then was the moment the midwife took you away so I could rest.

Then was being woken by a doctor standing the end of my bed. You had taken a turn for the worse and the ambulance was waiting to take you to an Intensive Care Unit, miles away.

Then was watching the paramedic whisk you away after we said our goodbyes, not knowing when we would see you again.

Then were the agonising days we were apart. Both too sick to be together.

Then was the day we came to find you.

Then was the moment we saw you again. Tubed, alarmed and incubated.The moment we knew we would never stop fighting for you, never stop loving you.

Then was the moment, a week after you were born, we knew for certain you had Down syndrome. Though no one ever officially told us. It was assumed we knew.

Then was the moment they gave us a leaflet to read. As if a leaflet could tell us who you were.

Then was the guilt we felt for your sister and how her life would never be the same.

Then were the questions that we only dared ask each other. Would people love you? Would your sister get bullied because of you? Would you be able to walk or talk? Sounds ridiculous now and hard to admit.

But that was then.

Then was when I didn’t want to join this new community.

Then was when I found it hard to celebrate World Down Syndrome Day.

Then was when I wanted my life a certain way.

Then was when I got it all so very wrong about you.

Now

Now is a sunny March afternoon.

Now I am more in love with you than ever.

Now I am looking at your eyes. Your beautiful, almond shaped eyes, and thinking how glorious they are.

Now I am staring intently at your perfectly formed features. Nothing misshapen whatsoever.

Now, I am watching your sister play with you and gently show you what to do with that toy you are struggling with.

Now I am fiercely proud of the bond you have with her and how much she loves you.

Now, there is no guilt. Only the realisation that you have brought more compassion and understanding to her life than most people will ever get the chance to develop.

Now I see you trying hard to learn to crawl. Like you tried hard to lift your head or to sit upright.

Now I see you getting attention from complete strangers. Yes they stare, but then they smile. Often because you smiled first.

Now I see you using your hands to sign the words of a nursery rhyme.

Now I hear you say hello or bye bye.

Now I listen to you laugh at Humpty Dumpty falling off the wall …again. Still as funny as the first time he fell.

Now I see you looking worried when someone is crying. The empathy you show is beyond your years.

Now I see you throw your arms around whoever has picked you up. You give them the biggest hug.

Now I see the widest smile on your face when we do the Hokey Cokey.

Now, I count it a privilege to go with you to the myriad of hospital appointments that come your way, or sit by your bedside in hospital and comfort you after another traumatic surgery or procedure.

Now, I shout it from the rooftops when you make any kind of progress, however small. But I want you to know I would still be celebrating you even if you didn’t. You are loved because of who you are not what you do.

Now I know that you are fearfully and wonderfully made.

Now I am proud to be a part of the Down syndrome community. I am proud of all the incredible friends I have made because of you.

Now my life is not how I would have chosen, but it is much better with you and because of you.

Now I am preparing to celebrate World Down Syndrome Day like never before.

Now is much better than then.

For Hazel x

2015 socks logo

Wear Lots of Socks for World Down Syndrome Day on 21 March and help raise awareness!

Text SOCK57 £1 to 70070

Find out more here 


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The Colour Purple

Hazel has been tube fed all her life. A total of 3 years and 4 months almost to the day.
The little tiny naso gastric or ‘NG’ tube that she had inserted through her nose and into her stomach soon after birth didn’t worry me at all in those early days. I’d been there, done that with my first baby. The nurses were always on hand to re insert the tube when it inevitably got pulled out by her tiny fingers. They were expert at getting it back in place with minimal fuss.
It was a temporary necessity. And I believed the optimistic medic who told me ‘she’ll be feeding in no time.’
So, when Hazel finally came home from hospital…some 2 months old and with a feeding tube it was a whole new ball game.
As we left the comfort and security of the neonatal ward, where pretty much every baby had a tube of one sort or another, our hearts were almost as laden as our hands.
Boxes of large plastic syringes, spare NG tubes, reels of sticky tape and other medical paraphernalia too numerous to mention were loaded into the back of our car.

Some parents of children with Down’s syndrome will tell you that one of the hardest things to deal with when they first took their new baby anywhere was fear. Fear of how others would react when they first found out that the baby had the condition.
I was no different and I had (or so I thought) an additional reason to be fearful. One that was literally plastered to her tiny face. Sometimes, the tube was all I could see. I thought it was all others could see too. Of course, it was very conspicuous. There was no hiding it, though I tried.
It took me a week before I finally plucked up the courage to go out in a public place with my new baby. I felt ashamed. Wrongly so – I know that now.

To be fair, it didn’t exactly help that, as I reached the end of that first trip…a quick dash around my local supermarket – the cashier leaned over to get a closer look at my baby. Then, pointing directly to her face she asked, in a very loud voice “What’s that?”
I wobbled, inside and out. Taking a deep breath I mumbled an explanation. Desperate to get out of the store and away from her stares and questions. I was mortified.

Yet, her ignorant question was so inappropriate it was laughable. So, as I walked away, still reeling from her insensitivity, I started to laugh.

I had faced one of my fears.
And I was ok.

I began to see that this young woman had actually done me a great favour. Her intrusive questioning actually became the thing that broke the hold that fear had on me.

As the weeks went on so I my courage grew.

A full lunchtime feed in the middle of Nandos. Purple syringe and plastic tube in one hand, bottomless refill in the other. Diet coke – for me, not her. Made even more memorable by the entire feed coming back moments later, as was her habit. Forcefully. My husband simply got up and went to fetch some more paper towels – they had a cute chicken motif. He then mopped the growing exclusion zone around our table as best he could and I started the feed again.

The waiter asked if we were enjoying our meal. I lied. I didn’t care.

That last sentence is, of course, not true. I felt the stares of every person in that restaurant as well as a few passers-by; we had a window seat. Tube feeding in the middle of Nandos is not normal. So, we had to make it normal, at least for us if no one else. We desperately needed some normality back in our lives after months of hospitals and hiding away. And, this new normality came with its own colour.

Purple.

Purple is the colour of tube feeding. Purple is the colour of all that goes with it. The syringes, the tube, the pump, the milk even; well, the container! Once a month, for the last three years we have had a delivery of purple. Boxes and crates of purple that fill up our hallway.
And, we are very grateful for the colour purple. It keeps Hazel alive. Without it she would not be. No amount of coaxing or cajoling could persuade Hazel to eat or drink enough by herself to survive. That will, we hope, come in time. For now, we accept that purple is what’s needed and is what’s normal. For us and also for others we have come to know as friends; their lives are purple too. Many of them will always be purple.

I could perhaps write one of those list type books…”Places we have tube fed in”. It would be full of the usual ones that people like us find themselves in…..hospitals, clinics, parks and cafes. As well as a few others… in church, on the train, in the car, in a stately home…….

Oh and the beach!

Memorable for all the wrong reasons. Hazel pulled her tube out, I struggled to get it back in. More stares. Though, in fairness, our fellow beach goers could be forgiven for staring. The screams she emitted as I tried and failed to reinsert the tube were horrific. These were the times when life with a feeding tube all got too much. Stoicism left me and I would throw in the towel. If it weren’t for the expertise of others, I don’t know how I would have coped. Nurses on hand 24/7; we were given open access to our local children’s ward. Or the invaluable support of a mum who had mastered the tube with her own daughter and was there one particularly stressful day when it came out. She calmly put it back in whilst I sobbed. Defeated.

Then, there are those heart sinking moments when we discover that we’ve actually been feeding something other than Hazel. Her cot, for example.  The tube silently worked loose, milk seeped out all over the mattress and all who slept on her. Panda, teddy, and Hazel.

Now Hazel has a different kind of tube. Gone is the NG tube as well as the awful struggles that went with it. Instead she has neat feeding ‘button’ right in the middle of her tummy. So much easier on all levels, and not least because her beautiful face is no longer harshly obscured. We have only a handful of baby photos where she has no tube. Quickly grabbing the camera to capture the moment, usually just after she’d pulled it out.

One day the colour will change. Hazel will, in time, learn to feed. With the help of therapists and others it’s what we are working towards, praying about and looking forward to. She will get there, sooner or later.  For now, we accept that purple is a huge part of our lives. And, in the unlikely event that she doesn’t, we know that this colour won’t define her any more than her extra chromosome does. Hazel is a joyful, smiley, noisy, cheeky, sometimes cross but most of the time happy little girl who adores her sister. She loves life; even a tube fed one and has no sense of missing out on anything. She would be the first to let you know if she wasn’t happy about something, that’s for certain! And, if Hazel could talk, I think she would say this:

Why spend time eating when you can laugh and play instead?!

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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! 

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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


4 Comments

A Dog Called Oscar

Boy.

I don’t know your name.

Don’t be afraid. There is really no need.

I saw you turn your head. That’s not unusual, many do. Sometimes they smile. Or laugh. Some wave or say hello. It’s hard to put into words how uplifting it is when someone makes the effort to engage. Because they want to.
And it makes my day.

Then, there are the moments that cause me to catch my breath. Few and far between, thankfully, but they still pack a punch and leave a scar.
You got me.
No smile. No wave. That’s fine, really.
But you did not look away. You stared. As you overtook us, you looked back and you stared even more.
And in that stare all I saw was fear and, dare I say, contempt for what you did not understand.

I don’t blame you. It wasn’t your fault; how could it be?

You were on your way to school with your friends. No more than 8 or 9 years old. A credit to your school image. You wore a smart coat. Your shirt was tucked in and your shoes were clean. You did not push past me; you were not disrespectful in any way. You probably work hard at school and are a pleasure to teach. If my daughter were old enough to hang around with you, I think I would be pleased.

That’s the problem.
Appearances can be deceptive.

What did you see when you stared back at my child? I think I know.
You saw something that made you afraid. You saw something that the world doesn’t want you to see. You saw someone society rejects. 91% of the time*. You saw Down Syndrome.

In that moment you rejected her too.

How?
How did you come to see something you did not like? Who told you that’s what you would see? Who taught you, a child, to be afraid of my child?
Both innocent.
You weren’t born with those fears or prejudices; of that I am certain.
Yet you have already been shaped to shun what you do not understand. What you see as different.

It’s not your fault. It can’t be.

Looking is good. Connections can be made by a look. Staring is also ok with me. Sometimes I do the same. But in your stare was a rejection of one of my most precious possessions.

And it stung.

She did not ask for your approval so why did you give her your rejection? Who told you to do that?

Go ahead and stare. Stare all you like, but please don’t leave it there. Say hello or just smile. We collect smiles. They are taken hold of, embraced, then locked away in our memory bank.  Cherished. Like collecting conkers or picking blackberries we go out hoping to find more each day. We think about them, talk about them, get them out and relive them. There are so many.

The man in the Post Office who paused to pull funny faces at her, making her laugh. Or the woman who walks her dog every day and stops to say hello. Not to me, but to her.
We don’t know her name either.

These are the moments that carry us forward into a brighter day. These are moments that are filled with so much more than just a smile.

The dog is called Oscar. We are good friends.

Or, if you prefer, don’t even give us a second thought. Allow us to walk along the pavement just like you. Pass us by like you would most other strangers. Without a backward glance. We won’t be offended or feel rejected; acceptance comes in many forms.

And, in return, I will try not to judge you too.

 

* According to national statistics 91% of babies diagnosed prenatally with Down’s Syndrome are aborted in the UK.


4 Comments

Toy Story 3 (and a 1/2)

I love how uncomplicated children can be.

A question that I have heard many people in the Down’s Syndrome community ask is this:

How do you tell an older or younger sibling about their sister or brothers’ condition? 

When is the right time and what exactly do you say? How much will they understand?

I have an urge to prepare M for the day she is asked questions about her sister. I worry for her being given a hard time or even bullied because of her sister’s condition. How do I prepare her for other people’s sometimes negative or hurtful reactions?
What struck me very early on was that M saw nothing different about Hazel. I found this hard to get my head round. Some days, all I could see was the condition. Not every day, just some. So it was wonderfully comforting to see no recognition or awareness in my daughter’s eyes of this label. Hazel was and is Hazel. Or “baby ‘Azul”, as she would call her.

One day, I plucked up the courage to ask her the question I had been wrestling with. She was playing on the carpet with her toy figures.

“Do you know that Hazel has something called Down’s Syndrome?”

Ok, maybe not the most inspired of conversation starters. I was still learning. I held my breath, waiting for her reaction. In my head I was anticipating her urgent questions. How would I now define the condition for a 3 ½ year old?

I needn’t have bothered.

What is it?” She looked up, quizzically. “Is it a toy?”

I shook my head and laughed, mostly at myself.

 “No it isn’t a toy.”

And, before I could launch into my preschool definition of Trisomy 21, she had resumed play. Cinderella was heading off in the carriage to the ball. Prince Charming was waiting patiently behind a cushion and the Ugly Sisters were face down on the carpet. Their presence no longer required.

Her disinterest in my dilemma was overwhelming. Having established what was of most importance – that her sister’s (and I quote) “Down Dome” wasn’t something she should rightfully be playing with, M moved on.

Toys are everything when you are 3 1/2.

That day I learnt a valuable lesson about worry and anxiety. I wish I had not spent so long fretting over an issue that wasn’t. M will have her questions, no doubt. She will probably have to face those who are less than favourable about her sister. Yet she is growing up with an inbuilt acceptance of Hazel for who she is. It’s an acceptance that has always been there. No questions asked. No reason to be treated differently. Let’s just carry on playing and enjoying life, can we mum?

OK then.

Uncomplicated, humbling, love.

Sister not Syndrome.

IMG_1658


9 Comments

Disney Uncut

Disney is pretty big in my house. My 5 year old is working her way through most of the classics as well as loving the modern epics too. From Frozen to Fantasia we pretty much know all the songs off by heart. She is very familiar with the notion of frozen fractals, I, on the other hand, had to google them. Hakuna Matata is a concept we try to embrace and as for the Bare Necessities, well, perhaps the less said about those the better. There is one Disney classic that she has yet to discover. You may remember it if you are over the age of say, 35. The Incredible Journey. It’s a story of two dogs and a cat who embark on a journey across America to find their owner. (If you’re under 35 then you’ll probably recognise the remake version “Homeward Bound: The Incredible Journey”) Same sentimental story, different breeds, different names. Definitely Disney.

I watch my daughter act out the scenes from these films as she plays. Or rather, as she dramatises them from the living room, down the hallway and into the garden. She is desperate to go to Disneyland. She wishes she were Elsa. Or Anna, she’s really not fussed.  She wishes that real life was like a Disney film. So do I, or rather I did. Then, one day it happened.

Three years ago I was visited at home by my GP. I vividly recall his words as he sat on the end of my bed.

I had just brought my second newborn baby home from hospital. In truth, Hazel was nearly two months old by the time she was well enough to leave the neonatal unit where she had been treated for serious bowel problems. My first baby, M, had also spent some weeks in hospital yet bringing her home was different. A very happy occasion. Party time even. Our first longed for child at home after weeks of uncertainty about her health and mine. Tears of happiness and much joy.

This time was different. I felt no reason to celebrate. I thought it had all gone wrong. My baby was not supposed to have Down’s Syndrome. That was not a club I was prepared to join. As a woman of faith, I thought God had got it badly wrong.

It’s a strange juxtaposition. On the one hand, I was head over heels in love with my new baby. I had sat by her incubator virtually every day for the last two months. She was my baby and I loved her with all my heart. Yet the realities of bringing her home, out of that safe, cushioned neonatal environment where everyone cared and said supportive things, to suddenly being back in the real world where people sometimes stared, backed away from and condemned what they didn’t understand was terrifying. Combine this with the physical shock my body had gone through following another difficult pregnancy & c-section as well as the trauma of finding out our baby had Down’s Syndrome AND a daily 80 mile round trip to be at her bedside whilst still somehow caring for a two year old and perhaps you begin to understand just what state my health was in.

So it was that the GP was called after I collapsed in a heap on the living room floor and took to my bed, unable to face caring for my baby, whom I loved dearly.

He quietly listened as I explained why I couldn’t go on. Then, after making some suggestions as to the way forward (which included a helpful visit from a psychoanalyst as well as a psychiatrist to establish whether or not I could actually care for my baby) he then spoke the most powerful sentence and one that, even though I found hard to believe, I have never forgotten.

“You will meet some amazing people. It will be an incredible journey”.

Three years on and those words have never been truer. What felt like a nightmare, a very bad dream has become a life changing event. For the better. Having a child with Down’s Syndrome was not something I would have chosen. Most parents of children with Down’s Syndrome would probably say the same. And yet, here’s the incredible thing….despite the many difficulties and struggles along the way, Hazel has brought more joy into our lives than we could ever imagine!

Hazel’s infectious personality, her warm hearted spirit and her downright joy continue to brighten each day, not only for us but for others she meets.

She has taught us so much in a short space of time. We have learnt to love unconditionally. We have learnt not to fear or shun difference. We have learnt to celebrate even the smallest achievement or take time enjoying the simplest of pleasures in life. Through Hazel and, because of her, we have met some amazing people. People who are also on this incredible journey; people who also went through the same fears and struggles as us and yet they are living happy and fulfilled lives. People who have had to face harder, tougher struggles than ours yet who do so with grace and without bitterness. We have learnt to find joy in the most unexpected places. And, without denying or pretending that there aren’t some really tough times – it is much harder parenting a child with special needs than one without – I am excited about living the dream!  A dream of having a family of my own. A dream that took ten years to be fulfilled in M, who’s name means “wished for child“. I am blessed beyond measure by my two beautiful little girls. Nothing gives me greater joy than watching them play together, laugh together, create mayhem together and live life to the full together. I am thankful to God to be on this Incredible Journey. I’m also excited about starting a new one by writing this blog. And who knows? Maybe one day we’ll get to go to Disneyland too!

Copyright of all text & personal photos A.Morley.

All views & opinions expressed are personal.