Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


2 Comments

Turned out nice again

If there’s one topic of conversation that we Brits do well it’s the weather. I wonder what on earth we would talk about if our weather was always the same. Without this subject, I fear we may never talk to our neighbours or people we meet ever again!

Picture the scene, a busy Post Office, in a suburban town in the U.K.

A queue. Oh we do those well too, queues. Usually in silence and often impatiently. Avoiding eye contact and hoping that no one invades our personal space. Unspoken rules of being British, and, if you are a visitor to these shores or have made your home here then you will have possibly been on the receiving end of one of our glares or tuts of disapproval if you dared to get any of this wrong. Please accept our apologies if this has happened to you. We don’t mean to be so rude. At least I don’t think so.

But you are not alone. My daughter, who has Down’s syndrome, hasn’t learnt those rules either. And I hope in some ways she never does. As we took our place in the queue, me standing and Hazel in her wheelchair with shiny bright pink wheels, waiting our turn, she pretty much broke every one of them.

Firstly, she cheered as we went in, hands waving frantically. Everyone turned and stared at us.

Ssssshhhhh, they said, not actually saying a word.

Secondly, she laughed. Loudly.

Giggled.

At what, I have no idea. Maybe the fact that there were lots of people all standing there saying nothing at all was very funny.  It is, if you stop and think about it.

The Post Master definitely smiled, I caught his eye from my place in the queue.

Cashier number 2 please.

Two more still in front.

A commotion behind us. The whirr of an electric wheelchair. Not pink and pretty, but cumbersome and clunky.

The silent, staring, glaring faces turned again. Then turned quickly back for fear of making eye contact with its occupant. Letter in one contorted hand, control stick in the other.

Fear.

More silence, if there is such a thing as more silence when you already have silence. Relief that they were ahead and not behind was tangible.

I moved her pink wheels to make room in the cramped waiting area for his black ones. As I did, she broke another rule. Or was it a barrier? She reached out her hand and placed it firmly on his knee. And, in a second, the rule was broken, the barrier lifted.

“Hello”, he said

“How are you?” He said, his voice as shaky as his hands.

She didn’t answer. She can’t. Yet.

But she spoke louder and more clearly than all the articulate people in the Post Office put together.

The Post Master smiled. So did the other customers. One stepped forward to help our new friend put his letter on the counter. Another turned and spoke to Hazel, admiring her pink wheels.

Silence broken. Lines of communication opened.

As we left the Post Office, our electric powered friend was already half way up the road. There was no stopping him. Though I’m sure there are plenty more barriers he will have to face in his life. As do we, but, at least for now, in her five year old world, Hazel has no idea those barriers even exist.

Turned out nice again.


5 Comments

Love in every stitch

I am knitting.

There. I’ve admitted it. After all these years, I am learning to knit.

And I am loving it.

I’ve never been a fan, it’s fair to say. There were better things to do with my time; not that I had the time to do better things. I felt superior. That knitting was beneath me. Fanciful yet dull. Not cultured enough.

I suppose I even looked down on those who spent time and money on this hobby. Believing them and their creations to be less than.

Preferring shop bought perfection over (what I saw as) imperfect and clumsy looking.

Frills and frou frou.

I was the same with houses. Give me a modern, easy to maintain, some say characterless, property over an older one with its quirky features and creaky floorboards any day.

I didn’t see the joy.

The love in every stitch.

The story in every room.

All I knew was prejudice – towards knitting and crafting. Towards joy.

Until last week.

In a few short months I have been truly humbled by some new friends. Their love and joy for this most ancient of crafts has made me realise how much I have been missing. Hand crafted items that I once would have been disdainful of, I am coming to regard as things of beauty. Things that have the power to make my heart sing even.

Love in every stitch.

So, last week, I began to learn to knit.

It did not start well. The woman in the shop asked me if I had chosen the right size needles. Did they have the right number on them? She obviously saw my hesitation and suggested I could go back and change them if they were the wrong ones.

I just nodded. I hadn’t the faintest idea what she meant. Her next question stumped me completely.

“What are you knitting? What’s it going to be?”

Again, I had no idea.

But in a moment, across the counter, I knew it didn’t matter.

I knew that whatever I knitted would be beautiful.

Unique.

A one off.

It mattered not what it was, or how long it would take to finish – if ever.

It was mine.

I paid, stuffed the needles and a ball of wool into my bag and left the store.

Excited.

There’s a verse in the Bible that I have always loved…

You knit me together in my mother’s womb …. I am fearfully and wonderfully made.”

When my baby was born with Down’s syndrome I had many other prejudices that needed taking down. Prejudices about people with Down’s. Ideas that they were somehow less than other people.  I craved the perfection I saw in babies without an extra chromosome. I asked why my baby had been given the wrong number. I wondered what she would become. How would she turn out?

Others asked this question too.

Some asked it before she was born. They said I could forget about her and try again. Hopefully get one with the right number. For all my prejudices towards people with Down’s syndrome, this suggestion was abhorrent to me.

Five and a half years on and I know now she does not have the wrong number.

There is no such thing.

She has a different number.

That is all.

Knitted together….fearfully and wonderfully made.

And there is love in every stitch.

hazel-in-hat

With thanks to the knitting & non knitting geese in my life.

Honk honk x


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

 

 


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


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.”


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


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