Downright Joy

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


5 Comments

When every day is your birthday…

Virtually every day for the last month I have listened to the same song.

That’s not surprising you say…over Christmas the shops are filled with Slade or Paul McCartney endlessly singing the same festive tunes.

Not in our house.

Every day, almost without fail, Hazel, who is largely non-verbal and has very little language as yet, has been singing.

The same song. Over and over.

Happy Birthday

Actually, it’s goes something like this:

“Appy budday dooo yoooooo

Appy budday dooo yooooooooooo

Appy budday dooo Ayzool.

Appy budday dooo yooooooo.”

Every time the lights on the Christmas tree were switched on, we heard it.

Every time a candle was lit to freshen up the house after a meal, we heard it.

Every time a visitor called by to offer festive greetings, we heard it.

Even in the Doctor’s tinsel clad waiting room, poorly and struggling with yet another infection, we heard it.

Hazel has no idea what Christmas is all about. Not really. That will come in time. She did not write a list for Santa, or even hang up her own stocking. She had little interest in opening presents – finding it all too overwhelming, instead shuffling off to find a quieter space. Not even a morsel of Christmas fare passed her lips, as she happily ignored all food yet again, content to let a tube keep her alive.

But she knew it was special and that was enough for me.

Like her birthday, last September. Special. Not that she understands birthdays either. But she remembers being celebrated with a special song. Hazel understands being special.  Not in the way some people use the term ‘special’ either – for all children are special. With or without an extra chromosome. 

No.

She is special because she is Hazel. She is planned and purposed. She is loved and wanted – but even if she weren’t (God forbid) she would still be special. She is special because she is a human being, made in God’s image.  She is special because.

Last year I, along with many others spent time and energy campaigning for the unborn – in particular those who are found pre-natally to have Down’s syndrome. We argued that their lives are worth living. That their lives are as worthy as yours or mine.

I would be dishonest if I didn’t admit that, at times I felt crushed by the campaign. I’m sure others did too. In reality, it was the attitudes I came up against that brought me low on more than one occasion. Imagine having to justify your child’s existence – I did when a journalist asked me to explain why it was better that Hazel was alive and not an abortion statistic.

I have found it difficult to even write about these things since the campaign reached its height – around the time of Sally Phillip’s excellent documentary A World Without Down’s last October.

I’ve wanted to hide away from the reality of living in a world that is so hostile to people with Down’s syndrome. I have felt it personally. I have felt the hostility and the hatred. I have felt it for my little girl.  I have cried many tears for Hazel and the discrimination she faces from those who think our society would be better off without people like her.

We’ve kept our decorations up a little longer than usual – for Hazel. She loves them so much. And, as she sang Happy Birthday to herself this afternoon, she reached me.

Again.

So at the start of a New Year I want to celebrate my little girl with an extra chromosome.

She celebrates herself every day after all! So why shouldn’t I?

Why shouldn’t the world celebrate with her and all those like her? I will not hide away and stick to damage limitation. I will stand up and fight for her and for all those who have no voice.  When she sings the one song she knows so well, I will not correct her and tell her it’s not her birthday (even though it isn’t!) Instead, I will sing it with her, as often as she wants to.

Happy birthday Hazel – I will celebrate your very existence and that of your equally special sister each and every day!

blowing-candles-downright-joy


6 Comments

Making Friends

Just a few weeks ago we took our family to Disneyland, Paris. The culmination of years of dreaming and pleading from our eldest child, and a venture into the unknown for Hazel, who has Down’s syndrome. Our first trip abroad, lots of strange sights and sounds. We wondered how she would cope.

I’ve always thought that anticipation is as much a part of an event as the event itself. The build up. As a child, I spent weeks, if not months, getting excited about Christmas, or my birthday, or our annual family holiday. My eldest daughter is the same. I encourage her in it. Christmas decorations go up at the earliest opportunity. Surprising her the night before we were going to Disneyland was never an option. I wanted her to look forward. Anticipate. Get excited about what the future held. So we told her we were going, weeks in advance, and enjoyed her excitement as the trip came nearer.

So I’ve always felt a little sad that Hazel is not able to join in the anticipation in the same way her sister does. She has no idea that Christmas might be coming. The night before her birthday passed like any other. No staying awake for hours on end, too excited to sleep. And, on Disneyland Eve, to sleep she went and to sleep she stayed until she was woken the next morning by her sister – who was desperate to get to France as quickly as possible. After all, Aurora was waiting...though possibly still fast asleep in her fairy tale castle.

Hazel wasn’t bothered.

But I was.

Feeling sad and reflecting on what I think Hazel may be missing out on in life is a trap for me. It’s all too easy to start a pity party of regret and over-indulge at the table of if only’s or I wish’s.

And, on the journey to Disneyland, I dwelt on this particular if only and it made me sad. Whilst Hazel, not really understanding where we were going or why we were in the car for so long, just carried on looking out of the window. Happily so.

Fast forward to breakfast the next day and we were sitting in the Hotel restaurant. Eldest child unable to eat for the excitement of all she is about to experience. And Hazel…well, unable to eat full stop. Tube fed since birth and largely indifferent to food. Playing contentedly with a fork or a napkin, I forget which. No idea where she was but seemingly very happy to be there.

And then she saw him. For the first time in her life.

Giant shiny black ears, shiny black nose and the biggest hands she had ever seen in her short life….

A familiar face to millions maybe, but not to her.

Mickey Mouse.

I held my breath. Anticipating Hazel’s panic and uncertainty about this larger than life character. Sensory overload never far away. But the opposite happened. Hazel’s face lit up. Literally. It shone. Her eyes sparkled and joy spread from her face to her entire body. Hands waving furiously, body contorting with delight.hazel-and-mickey-downright-joy

A little girl in love.

Hazel experienced joy. True and unadulterated. A joy that comes in the moment, out of the blue, from nowhere. A joy that knows no build up or anticipation. Exploding, overwhelming, joyous joy!

It blew me away. I can’t remember a moment quite like it.

One of the reasons I love Disney are the larger than life characters with their ridiculous plastic smiley faces, and colourful costumes. They need no introduction. Each one……Pinocchio, Minnie, Donald and Tigger, but especially Mickey, took their time with Hazel. Coming down to her level and gently touching her face. Not rushing on to the next person, but making her feel valued. Welcomed. Loved.

disney-princess-meet-2

The Disney Princesses couldn’t compete. Hazel’s joy was replaced with an equally priceless look of sheer boredom whenever we met one. Total indifference. The smiles were fake and she knew it. They tried. Ariel gave it her best shot. ariel-downright-joy

Snow White just gave up.   snow-white-downright-joy

 

 

 

 

 

It mattered not.

Mickey and friends were the true joy givers. Unconventional, with their oversized heads, enormous hands and feet, eyes the size of dinner plates.  Features that in real life may be regarded as ungainly or even unattractive. Yet these were the characteristics that brought Hazel the most joy.  Spending time in their company was a delight.

And now, I wonder if knowing about the surprise in advance would have made the experience any greater for her? I doubt it.

Hazel lives in the moment. She experiences life as it happens and she is all the more joyful for it. More than anyone I know, Hazel lives one day at a time. And, because she does, the opportunities to be surprised by joy are limitless.

It’s always good to make friends with real people from all walks of life.

I like it when people make friends with Hazel.

disney-land-castle

 

 


1 Comment

Rhinos & Elephants

The Duke of Cambridge, or Prince William, as he’s more fondly known, has a little girl called Charlotte. Charlotte turned one a few months ago. Charlotte is a beautiful little girl. I smile when I see pictures of her. She is a bringer of joy. Charlotte is too young to understand the attention that surrounds her. Her parents will do all they can to protect her from any harm. As she grows up, she will undoubtedly become more aware of how the world views her. Most will adore her, but some will hate her. I feel sorry for Charlotte.

Yesterday, her father gave an impassioned speech about African elephants and rhinos. These magnificent animals are under threat from poachers. From people who want to make money out of them. The Prince said.. “Rhinos face extinction in our lifetimes, as we struggle to correct lies about the supposed benefits of using its horn as a drug,”

They could be gone from the wild by the time Charlotte turns 25.

This is sad. Very sad. It is abhorrent that a price tag is on these animals in the first place. They are priceless.

But all is not lost. The Prince reassured us.

He said, “There is huge momentum building from governments, businesses, conservationists, and the public to take the steps required to stop the killing.”

Standing up for those who have no voice. Doing all they can to stop this massacre. Fighting greed and debunking the lies surrounding the health benefits of the elephant tusks.

This is good. Very good.

I have a little girl called Hazel. Hazel is about to turn 5. Hazel is a beautiful little girl. She makes people smile. She is also a bringer of joy. Hazel is too young to understand the attention that surrounds people like her – people with Down’s syndrome. As her parents, we will do all we can to protect her from harm. But, as she grows up, she will undoubtedly become more aware of how the world views her. Many will adore her, but many more will hate her. My heart breaks for Hazel.

The onset of the more advanced prenatal screening, or NIPT as it is known, means that more and more countries are racing towards “eradicating Down’s”. Though, of course, they will never actually achieve this as women will keep getting pregnant with babies that carry an extra chromosome. So they will terminate. Simple.

By the time my daughter reaches the age of 25, Denmark could well be “Down’s syndrome” free. Actually, this may happen by the time she is 19, if, as predicted the last baby with Down’s syndrome is born there by 2030.

And, as with the rhinos, there is also huge momentum building from governments, businesses (pharmaceutical companies), and parts of the medical profession. Only this momentum is not trying to stop the killing. It’s supporting it. Promoting it. Presenting it as a good thing even. Telling us this is choice. Poised to roll out the new non-invasive prenatal test far and wide without fully exploring the ethical implications.

This is sad. Very sad.

It is abhorrent to me that babies with Down’s syndrome are being given a price tag. A tag that quantifies how much of a saving can be made by the NHS if they are aborted. And, as many suspect, a tag that quantifies how much money can be made by the pharmaceuticals who promote these tests.

People with Down’s syndrome are priceless. As are you and I.

So now please allow me a little poetic licence in re-hashing the Prince’s words …..”People with Down syndrome face extinction in our lifetimes, as we struggle to correct lies surrounding them.”

There is another momentum building however. And it’s gathering speed. It may not have royal approval or backing, unlike the rhinos and elephants, but it is gaining attention.

Hour by hour. Day by day.

I am honoured to be part of this ever growing group of people that are standing up for those who have no voice. Exposing lies, debunking myths and bringing joy and hope to parents faced with a diagnosis of Down’s syndrome.

This is also good. Very good.

 

Watch actor Sally Phillips investigate the issues surrounding the new prenatal screening test in a new documentary being aired on BBC2 , 5th October, 9pm.

 

#dontscreenusout


4 Comments

Holidays & Fountains

image.

Holidays. We’ll never go on one again.

At least, that’s what I tearfully said to my husband a few days after Hazel was born.

“Children with Down’s syndrome don’t cope with holidays.”

I have no idea where that particular myth came from as I’d never actually spoken to any parents of children with Down’s to find out if this was true. But I’d read it, along with a myriad of other falsehoods and generally outdated information and that was enough. I was convinced our Great British seaside holidays (never mind going abroad – that was just completely out of the question!) were now at an end.

Finito.
End of.

Except….Someone forgot to tell Hazel that she couldn’t cope with holidays.

We do have to be careful in choosing our destination. Holidays with Hazel do take more planning and there are places we wouldn’t even attempt to go to with her.

The Isle of Wight has become a firm favourite with us for a holiday destination. Its slower pace of life (set in a time warp some say) and its micro climate make it ideal for us. Throw into the mix a sea view and a hot tub (no sensory overload in a public swimming pool for Hazel) and its easy to see why this place is enough for us. A change without upheaval. Oh, and there’s a washing machine here too. Vital.

When we do venture out for a bit of sight seeing we may spend hours pouring over leaflets deciding what will work for us beforehand. Jumping in the car and seeing where you end up is rarely an option when you have a children with additional needs.

I love attraction leaflets. I could read them for hours. Pour over every single detail, looking for the catch, looking for the deal breaker. A reason why we can’t go there. I usually find it too. Inadequate changing facilities (or lack of them), children’s play areas; squealy, shrieky, shouty places that Hazel would barely last 5 minutes in. So many challenges to overcome in order to have fun, spend time together, pleasurably. They are often no pleasure at all.

But here, on the Isle of Wight, there is always something for us to do without these challenges. And yesterday we found such a place.

Fountain World

Now. I’m often a little suspicious when any attraction has the word ‘World’ in its title. I’ve clearly watched too many episodes of Peppa Pig – Potato World, or Tree World to name a few. Glorified places of ‘interest’ with very little of ‘interest’ when you go beyond the brown tourist sign.

They promise so much.

I had my reservations as soon as we drove into the near empty car park.
After paying the entrance fee (cheery attendant telling us we could go in an out as many times as we liked), we went in.
First, we had to go through Butterfly World.
It didn’t take long. Not because there wasn’t much to see – there was. Beautiful butterflies of all shapes and sizes flitted and floated around our heads. A helpful expert on hand to tell us all he knew about the life cycle of the pupae.
Eldest child’s aversion to all living creatures kicked in and she made for the exit. Head down, almost commando crawling to the door to escape, losing the plot with every leaf that moved as she went. Mr Pupae looked a little crestfallen. He’d been waiting all day for an audience.

And so we found ourselves in Fountain World.

And this is where I take issue with the title.

Fountains there were. A world of fountains? Forgive me for suggesting otherwise.

We stepped further into Fountain World, sniggering quietly to ourselves as to the absurdity of such place, and why there were only a handful of visitors, but secretly enjoying its quirkiness at the same time.

And then there was magic.

In the aptly named Italian garden, cheesily styled with fibreglass temple porticos and statues galore, was a pond. And in the pond, a fountain. A dancing, jumping, joyous fountain of delight.
Hazel loved it. As the water shot into the air so did her hands. Each jumping jet of water matched by her excited jumping body. She clapped her hands with glee at this most unexpected water fantasia.

The fountain had a variety of different moves and routines. Hazel, who cannot yet walk or talk, was transfixed. Mesmerised. She would have happily stayed there all day watching it. Fountain World was just that to her.  It was everything. It was wonderful. Glorious even. A joyful and tranquil place. Unexpectedly delightful in its quirkiness.

The cafe was empty. Most tourists had overlooked Fountain World in favour of the beach or one of the more popular tourist attractions on the Island. I get why they did that. I would have done it myself had things been different. And yet they missed out, in my view. In Hazel’s view.

I recall being afraid of another ‘world’ some years ago. It was a world I definitely didn’t want to join. Be a part of. A world that I wanted to avoid. A world that I found myself in the middle of, without asking. I would have happily driven past the brown sign to this world if I could. The Down’s syndrome world.

I won’t lie – It’s a world that has brought me more challenges, more pain and more difficulty than I had known before. Even as I began writing this post, we were thrown into a full on emergency situation here in our holiday lodge, as Hazel’s feeding tube sprang a leak and had to be changed. The threat of a hospital stay is ever present in our lives. And yet, it’s a world that has brought more meaning, purpose and joy to my life than anything I had known before.

Many expectant women today see same brown sign that I did. It’s a destination they don’t particularly want to end up at. It’s got bad reviews. There are better places to go. More attractive places, more popular destinations. And, in many ways, they are right. Of course there are. But they have been sold a lie if they think this destination has nothing to offer. In fact, they may well have just driven past the most joyful and enriching experience of their lives. All because someone said ‘It’s not worth it, don’t go there’ or because they believed the myths about bringing up a child with Down’s syndrome.

Hazel loves holidays. For a while, I believed the myths.
She has gently, consistently and patiently proved to me, over and over again, that they are just that. Myths.

Hazel has Down’s syndrome. She is not Down’s syndrome. She is Hazel.

And she loves fountains.

image


9 Comments

Egg and Spoon

After one of the wettest summer months on record, the last thing you’d think I’d be doing is praying for rain. And yet, at 7am on Tuesday morning, as I looked out of the window and up at a dark, heavy cloud, that’s what I did. I prayed for rain.

Thirty minutes later and no rain.

Instead,  I got a text message from my eldest child’s infant school, happily declaring “Sports Day Is On!” And with that, the day ahead loomed larger and heavier in my mind than all the clouds put together.

It’s fair to say I’m not a fan of sports day. Putting aside my own childhood loathing of this school tradition, I now have another reason to dislike it. Fear it even.

My eldest daughter has Dyspraxia and Hypermobility. A condition that affects her in numerous ways – most of which are not immediately obvious. Poor muscle tone and weak joints combine to make every day, ordinary activities, that much harder for her. From climbing stairs to doing up a zip or a button, there are myriad ways in which she struggles.

And, top of the list of everyday and ordinary is PE. Sports. Physical activity.

Her first Sports Day she missed due to Chicken pox. Then, last year, she spent weeks worrying about it. Though, to be fair, her teachers were fantastic. Lots of support, practice and encouragement in advance of the day. And, somehow, despite coming last in every race she managed to end up on the winning team.

“It’s not about winning, it’s about taking part,” was the school mantra.

This year was different. And although she didn’t spend weeks worrying about it, I did. A week to go and I was checking the forecast daily, ever hopeful that the day would be thwarted by the British weather. Cancelled. I could then relax knowing that neither she nor I would have to go through the trauma.

“It’s not about winning, it’s about taking part”.

No. I don’t believe that either.

Too painful. Too difficult. Too risky. It’s not for me. It’s not for her.

Delete. Get rid. Don’t bother.

Had my prayer been answered, I would have unwittingly missed out on one of the best days of her school life!

First came the hurdles; small plastic tubes barely raised above the ground.

She got to the other end. She didn’t fall. She was smiling. Phew.

Then the sprint.

“It’s not about winning, it’s about taking part.”

Last.

And so it went on.

Last, last, oh, ok last.

Everyone cheered and clapped.

It doesn’t matter. It’s about taking part.

Lies.

Not that I needed her to win a race. I just didn’t want her to be last each time. I could tell her again and again that it doesn’t matter, but as she is the one who consistently sees everyone else from behind then it matters. Whether they are running a race, climbing a climbing frame or riding a bike or scooter. It is soul destroying to be the one that can’t.

Egg and spoon race.

“I’m good at the egg and spoon race,” she told me at breakfast.

“That’s good,” I said. I didn’t believe her.

She only went and won it…joint first with another child.

Hoo blinkin’ ray!

I felt a spot of rain. Great! Let’s stop now. Finish on a high. Quit while we are ahead.

“And now the sack race!” The Head Teacher announced.

M’s nemesis.

She clambered inside the sack. An achievement in itself; she couldn’t do that by herself a year ago.

Ready, steady, go.

M lurched forward and so did my stomach. Children pinging up and down; none of them particularly co-ordinated, but all of them way ahead. She got further than I dared hope but then I saw the look on her face.

A look of worry, panic. Close to tears.

 Parents and children alike willed her on. I am grateful for them.

A teacher stepped in and came alongside her. Then another.

And, in a moment, her biggest fear became her greatest joy.

 They scooped her up, still in sack, and bounced her over the finish line. The widest smile on her face I think I’ve ever seen.

It’s not about winning it’s about taking part.

Oh I see. Yes.

When others come alongside us in our struggles life is so much easier to bear. Joyful even.

There was more. A toddler race followed and younger sister Hazel took part from the comfort of her wheelchair. She took part. She enjoyed it. She was part of a community. She was included.

And to think I could have missed it all if I’d had my way. If my fears had been allowed to cancel Sports Day.

What. An. Idiot.

And, strangely, I am taken back to that April afternoon, 5 years ago, when a Doctor told me my unborn baby might have Down’s syndrome or may even die.

I remember the fear. Fear of the unknown. All I saw was difficulty and trouble. Risk. Pain.

To be avoided. Cancel this baby. Let’s not go there.

Only fear.

No one told me how much this child would enrich my life. How much beauty she would bring. How much laughter, smiles and joy.

I knew nothing of the joy.

Risk. They called her a risk.

I call her a joy.

I didn’t cancel the baby. I wasn’t strong or courageous. I was frightened. Afraid.

But it was the best decision I have ever made.

So to the expectant woman perhaps reading this who has had ‘the test’ and has been told her baby may have Down’s; I get it. I understand how you feel. I understand the fears you may have. I felt that way myself. But if there’s one thing I could change about the way you’ve been told the news it would be to remove that word ‘risk‘ and replace it with ‘joy’.

 There is, it seems, no test for joy. Only risk.

Some fears are definitely worth facing, some risks worth taking.

Miriam sack race downright joy


Leave a comment

Voices

So many voices just now.

Voices of reason.

Voices of hate.

Voices of sound arguments.

Voices of the implausible.

Voices that are angry.

Voices that are incredulous.

Voices that are disappointed.

Voices that are elated.

Voices that are fearful.

Voices telling lies.

Voices telling truth.

Voices twisting truth.

Voices that are scared.

Voices that are triumphant.

Voices that are evil, hate filled, stirring up violence.

Voices that are compassionate.

Voices that give hope.

Voices that speak against injustice.

Voices of the classes. The rich, affluent, well off, comfortable voices.

Voicing.

Voices of the poor; the poorest in society.

Needing to find a way to even use their voice at all. Their views are so rarely sought; they fail to meet the requirements for an educated debate. Their opinion does not count. It is uninformed. It is uneducated. It is unworthy.  It must not be allowed to have influence unless it first becomes those things. It’s too risky. Too flawed.

I think I may have heard this sentiment elsewhere and it makes me uncomfortable.

I recognise my past failure to listen to this kind of voice. I have ignored their cries. Ignored their anger. Silenced their voices. I am not a champion for the poor. I do not claim to know what their lives are really like. But I have judged them and, at times, hoped they would not impact my life too much. I don’t like mess.

And some voices are never heard.

They are silent.

Unable to speak.

Deemed unworthy of a voice at all. They don’t reach the standard of the informed or educated.

They are seen as a “risk“. A problem. Too costly. Too flawed.

In the UK around 90% of babies prenatally diagnosed with Down’s syndrome are never given a voice. Their voices are silenced. Even those that are given a voice may then go onto face ignorance and discrimination. Their voices are ignored. Deemed irrelevant.  “Backward” or worse, “retarded”. Never amounting to much.

I cannot ignore their cries. I cannot stand by as their voices are silenced.

My own little “risk” is nearly five years old. She has not yet truly found her voice. And yet she speaks more loudly, more beautifully, more lovingly and more joyfully than any other voice I have heard. She speaks into my life and the lives of those she meets. Costly? Hugely so, but a price worth paying a thousand times and more. She gives back far more than she ever takes.

Prejudice and intolerance come in many forms and I am not immune from their guises.

Voices need to be given to those who have none. However costly. However risky.

And the risk may be overwhelmingly worth it for all.

Listen for the voices we cannot hear. Voices of those who are actually more alike than different.

So I say this firstly to myself for I am guilty of so much that has not helped others: Shout louder than the voices filled with hate. Listen to the voices who are disappointed, fearful and hurting. Whatever their background, wherever they are coming from. Offer hope not judgement.

“Love must be sincere. Hate what is evil; cling to what is good.”


6 Comments

Handbags and gladrags

handbags-507822_1920 (800x450)

Once upon a time a woman decided she wanted a handbag. Her friends all had handbags and she decided the time was right for her to get one too.

So she went to the handbag shop and asked for a new handbag.

The shopkeeper told the woman there were two types of handbag to choose from. Blue or pink. The woman said she really didn’t mind what colour handbag she had, so long as it was a sturdy one, without any flaws in the leather.

The shopkeeper smiled, handed her a blue handbag and congratulated her on her new acquisition. The woman took her lovely new blue bag outside into the big wide world to meet her friends and compare it with their handbags. The woman was very happy with her choice.

A while later another woman entered the handbag shop and excitedly asked for a new handbag too. This time the shopkeeper handed the woman a pink one. She was very pleased as she had secretly hoped that it would be pink but hadn’t dared to ask, although, of course, she would have been just as happy with a blue one.

The shopkeeper continued to do a roaring trade in handbags and most people were very happy with their purchases.

One day, a young woman came into the store looking for her first handbag. Nervously she looked around at the choice. Blue or pink (neutral was also being introduced as there was now a growing demand for this to be an option.)

The shopkeeper handed her a bag. It was a beautiful bag. Vibrant pink. It stood out from all the others. However, the woman looked at it and shook her head.

 “I don’t want that one,” she said, fearfully.

Why not?” Asked the shopkeeper.

“It’s different. It won’t work properly.”

The shopkeeper nodded in agreement.

“Well, it’s entirely your choice.” He said, failing to tell her of the beautiful bag’s potential. Of all it could be to her. Failing to help her see its enormous possibilities whilst not denying its limitations.

Failing her.

“No. It’s flawed. It’s not fit for purpose”. Her mind was made up. “I don’t want one that stands out. I want one that looks the same as everyone else’s. Take it away. I’ll come back when you have a better one in stock.

“Of course,” said the shopkeeper, “no problem.”

The woman left, sad, hurting, empty handed. She had made her choice. It wasn’t easy but she felt it had to be done.

Sometime later, another woman entered the handbag shop, accompanied by her husband. He did all the talking.

“We want a handbag.” He said abruptly. “It must be a blue one.”

 The shopkeeper looked behind the counter.

“Sir, we only have pink ones today. I cannot guarantee you a blue one. Here, this is your handbag.”

The shopkeeper showed the man a beautiful pink shiny handbag and then handed it to the woman. The woman’s eyes lit up for a second. Then she lowered them. She knew it would not do.

“It is not blue,” said the man. “It will not do.”

He took the bag from his wife and handed it back to the shopkeeper.

 “Take it away immediately. We will return when you have a blue one in stock.”

And with that, the man marched out of the shop followed by his wife. She had not uttered a word.

The woman had no choice.

Finally, another woman entered the handbag shop. It was getting late and she was in a hurry. She didn’t have time to really look at the handbag she had been given until she got out of the shop. She immediately noticed it was different to all the other handbags she had seen. Very different – some would even call it flawed. And, although at first shocked by the handbag, quickly the woman began to love it and wanted to keep it. It was her handbag.

However, when she showed the handbag to her partner he did not share her love. So much so, he could not live with this particular handbag and demanded that the woman give it away.

For whatever reasons, the woman felt she had no choice but to give in to his demands. Thankfully, a couple who had been unable to even get into the handbag shop were immediately found to give the handbag a new home. They were delighted. They would look after the handbag from now on.*

But this was not the woman’s choice.

The End

Someone said recently that having a baby is becoming more and more like choosing a handbag. Only the healthiest, fittest and definitely NOT disabled will do. Even gender is now a deciding factor and not just in other cultures or countries but here in the UK.

The right to choose is upheld as the greatest victory for women’s rights. And yet so many women do not even have that choice open to them. We are kidding ourselves if we think they do.

*The last example in the story above I have drawn on from meeting a beautiful baby very recently who had been put up for adoption. The baby had a non life-threatening condition. The mother wanted to keep the baby, the father didn’t. The father won. Whose choice was that?

Choice MUST be informed…..that is something those of us in the Down’s syndrome community are fighting for with the introduction of the new prenatal test that is set to be rolled out across the UK. Yet what is it that we are actually choosing? A handbag? Or a baby. Disposable goods or a human life?

Choice (informed or otherwise) is not all it’s cracked up to be. Just ask the women who don’t have it – though they probably would be too afraid to admit it. Choice has its limitations but possibilities are endless.

Women deserve better than a trip to a retail park. And so do their offspring.


4 Comments

Just do it

Just do it.

Or so we were told by a famous sports company back in the day. Whatever ‘it’ was.

If there’s one lesson I’ve learnt since having child with additional needs it’s that we don’t just do anything.

There’s the big stuff. Learning to sit, crawl, stand, walk, talk, and in Hazel’s case especially, learning to feed. We follow a different time-scale to most.

I have an early, painful memory of being handed Hazel’s little red book by a well -meaning nurse, only for her to return shortly afterwards and abruptly pull out the growth charts, replacing them with a special set – exclusively for children with Down’s syndrome.

“You won’t be needing those, you need these.”

My already fragile and hurt feelings were then compounded by a visit from the audiologist who was doing the rounds in the tiny NICU room we were in. I overheard her speech as she went from cot to cot, parent to parent, explaining the routine hearing test their babies would soon be having and how they would probably have nothing to worry about.

Then she came to me.

The tilt of her head did nothing to prepare me for her words. Delivered with a gentle brutality as to send me reeling.

“Of course, your baby might not pass this test”.

I wasn’t prepared. I wasn’t ready to be different.

Deep deep breaths.

Then there’s the smaller stuff that having a child with complex needs means…so that we don’t “just do it”…

Going to the park. Getting a babysitter and going out for an evening. We need a nurse for that.

Dropping in on friends or taking a day trip. The cinema, theatre or pantomime, zoos, farm parks, play areas. Even a simple picnic in the sunshine. Concerns about sensory issues and how Hazel will react.  Changing facilities (or lack of them); all these factors add up and quite honestly often put us off setting foot outside out home.

Hazel’s feeding equipment, routines and reactions make these things harder. Not impossible, but harder.

Even the things we do “do” take far more planning than we would like.

Going to Church, a trip round the supermarket, a children’s party, lunch with friends or family.

Sometimes it’s easier not to even attempt these things.

And, if I could change this, I would. In a flash. Of course I would. Who wouldn’t?

The truth is we can do many of these things, but the word “just” has to be firmly kicked into the long grass.

And that is absolutely ok.

When you “just do” something you may miss the complexities of how it is done. You may miss the joys of achieving the seemingly impossible. You may take it for granted.

But, when you finally “do it”, do the very thing that is so hard for you to do, however easy it might be for others, then the sense of achievement is often beyond measure. The appreciation for what might be a simple pleasure is second to none.

It’s in those moments that my heart sings.

Today held one such moment.

Hazel doesn’t eat. She is 100% tube fed.

We try. We try hard to help her to learn. To help her to want to eat. We play, we have fun with food. We get messy.

In school it’s called “Food is fun”.

But it is hard. So so hard.

 Hard when the walls, ceiling and anyone else sitting at the table is covered in whatever food Hazel has been “playing but not eating” with. Today it was orange. The colour, that is.

Pureed carrot and sweet potato. The clean-up took three times as long as the ‘meal’. It even reached the television which was quite a feat considering that’s in another room entirely.

Ah but surely this is quite usual for a child learning to eat, you may think. It’s a phase.

Yes.  It just doesn’t usually last four years and counting.

We clean up, with a heavy heart and an unspoken envy of families where children just pick up a spoon and eat; or who can go off out into the sun with a picnic whenever the mood takes them.

But not today.

Today my heart sang.

It sang at the smiles, laughter and joy Hazel exuded in her state of orangeyness. It sang as she giggled throughout lunchtime, happy to be with us at the table, enjoying the moment and being part of our family. And it sang because, in all the laughter, Hazel actually took two spoonfuls of the vegetable medley in her mouth!

Food really is fun!

So we will continue to embrace the mess. Savouring, relishing in and enjoying the milestones, or even just the stepping stones along the way.

Golden moments in time that are hard fought for.

One day we will picnic together, all four of us.

But I don’t really ever want to “just do” anything.

Downright Joy 2


6 Comments

Brush with joy!

A trip to the dentist can be stressful for most people.

A trip to the dentist for a child is something that takes careful planning – until they get used to it at least. With my eldest child this meant watching a YouTube episode of Tots TV – the one where they go to the dentist – as well as observing mummy’s teeth being scrutinised by our lovely dentist before her turn to sit in the chair.

” It’s very dirty inside mummy’s mouth” being the only observation my 5 year old made – and I was in no position to argue, mouth wide open, mid-scale and polish.

And, a trip to the dentist for a child with additional needs can be a different experience altogether.  Powers of reasoning are nil or virtually non-existent. The best that can be hoped for, on the first few visits, is that the child gets used to the clinic. Actually, this is the easy part, Hazel loves visiting clinics and hospitals. She hasn’t had much choice in the matter and often comes away with more than she went in – usually a teddy or a toy if it’s been particularly traumatic, a sticker if less so.

Then there’s the chair, the shiny bright light and the dentist. Oh and the dental nurse. However friendly they may be, it’s still an enormous ask for Hazel to let them anywhere near her mouth. As a child who is 100% tube fed, Hazel has more reasons than most not to open her mouth. Oral feeding is a huge challenge for her and us, and, although we believe she will learn to eat eventually, it’s one step at a time. Hazel knows all too well that if something is supposed to go in her mouth (i.e. food, drink or a toothbrush) then it is to be avoided at all costs! Paint, glue or sand, however, can be consumed in vast quantities. At least, that’s what Hazel thinks. When it comes to feeding, or in this case a dental examination, you may smile all you like at her, play peekaboo or whatever. She ain’t going to open wide for anyone!

Until today.

All credit to the dental team we saw. Not our family dentist, but an NHS clinic that specialises in treating patients with additional needs. And boy, did their training pay off!

It started well. Smiles and “hellos” all round from Hazel to everyone and anyone in the waiting room – as well as to the staff standing in doorways as she trundled along in her wheelchair to the examination room.

The dentist and her nurse got the joy treatment too. The dentist and Hazel soon made friends….the inflated surgical glove trick was hilarious.

Then came the stand-off.

No amount of “tickle-tickle” or “look at the pretty light” would cut it. Hazel shut up shop. Jaws clamped together. Prising them open? A foolish notion that was never going to be an option. I valued my fingers as did the dentist.

We changed position. Taking Hazel out of her wheelchair and sitting her on my lap as I lay back in the dreaded chair. Hazel relaxed a little, presumably thinking her ordeal was over and we were merely getting comfortable. She began to “chatter” in her own way. Not many recognisable words to the untrained ear but I knew it was a song she loved. Her most favourite song in the world. Ever.

Happy Birthday.

The dentist and her nurse took their cue.  And, as if on repeat, they sang Happy Birthday to Hazel. Over and over again. And Hazel lay on top of me virtually still (though the arm lock I had her in, not to mention the leg restraint from the smiley nurse may have had something to do with it!)

Mesmerised by their harmonious singing.

The dentist saw all she needed to. Though I confess I felt a little stab of guilt that it wasn’t actually Hazel’s birthday and that I might just be adding to her confusion by using the song out of context. However, the end justified the means.

Advice and Disney sticker dispensed and we were on our way. The dentist recording in her notes that Happy Birthday might well do the trick again next time.

And, as we left, the dentist and her nurse told us they’d had a challenging day in the land of special needs dentistry, but that Hazel had been a delight to finish it with. Smiles all round.

Just another day in the life of our family and not without its challenges as she has been unwell but Hazel still manages to throw a little joy bomb* into the lives of the people she meets.

 

*Joy bomb – a term I have unashamedly stolen from another mum of a child with DS. If ever there was an expression to sum Hazel up it’s this one!


Leave a comment

Turn Back The Clock

 

May is nearly upon us and, for me, this means one of my favourite things. Chelsea. Not the football club but the Flower show. Not that I’ve ever been. I’d love to, of course, but the demands of caring for a young family with additional needs prevents trips like that at the moment. One day I will go. One day.

For now, I’ll settle for a week or so of high definition images via the BBC and Mr Titchmarsh & Co.  Pure indulgence. A week of dreaming that my humble little back garden will somehow also be transformed into a panoply of perennials, a cornucopia of chrysanthemums and cordylines.

It never is.

I have dandelions growing in my conservatory roof.

I’ve yet to hear or see the humble dandelion get a mention at Chelsea. I’m not sure they’ve ever even heard of one.  After all, it’s a weed. Not wanted. No place for it. It would spoil the garden. Ruin it, even.

The dandelion is hated. People wage war against it, so much so we spend millions of pounds on products aimed at destroying it.

The dandelion will grow anywhere. Except where it has been eradicated.

Yet the dandelion is also loved. Childhood games spent telling the time with a dandelion clock. So perfectly formed, so intricate, so gentle and so beautiful to look at. Then, as the seeds are blown, delightfully, by a childish puffing of cheeks, they are carried effortlessly away on the breeze. Landing somehow, somewhere and there, they begin to make their own mark in the world. A world that doesn’t really want them. Wishes they weren’t there. Will do all in its power to eradicate them.

When do these same children learn to hate something they once cherished? When does fear replace this childlike acceptance?

I don’t know the answer but somewhere along the road it happens.

Fear.

And so it is with having a child who has an extra chromosome.

Fearful.

At least it was for me, and, given the statistics on how many terminations take place in the UK following a diagnosis of Down’s,  I think it is fairly reasonable to make the assumption that fear has a huge part to play for many who find themselves in the same position as I did.

I was afraid of the dandelion.

I was afraid of how it would spoil my garden. Take over. Damage. Ruin its perfect appearance. Make gardening harder.

Of course, my garden was never perfect, but I strived to make it so. I could not let the dandelion spoil this dream.

I was affronted by this ‘intruder’. I believed the lie. That the dandelion was harmful. That the dandelion was ugly. That the dandelion had no place in my garden.

But I could not eradicate it even though I was told it was possible. Easily arranged. For the best.

And, I am forever thankful, that my fears although real, were never strong enough to take hold of the situation. They were never allowed to go to the garden centre and buy the weed killer. Though, for a while, I am ashamed to admit, I envied those who could.

I began to love the dandelion. I began to cherish its beauty.

And, over time, the shame I had wrongly felt at having a garden with dandelions was replaced by a sense of awe and wonder at this beautiful plant. I discovered its beauty, its benefits and its immense joy. I love how it pops up anywhere, it’s deep vibrant yellow flower forcing its way through the most hardened of soils and singing in the sunlight. Enjoying life. Enjoying being there. Dandelion experts even tell of the health benefits it can bring. Who knew?!

The dandelion is not supposed to be here. Or so you would think.

I wish I could turn back the clock and re frame the dandelion.

It deserves it.

The dandelion makes me smile.

050