Downright Joy

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


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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


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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! 

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