Downright Joy

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

Category Archives: Down Syndrome


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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.

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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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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.


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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.

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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.