Downright Joy

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


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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

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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

 

 


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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


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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!