Downright Joy

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


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If the cap fits

mannequin-732631_1280

“But what do you do all day?” Is a question I am sometimes asked and, well, I don’t like to be impolite but, seeing as you asked (and even if you didn’t) I will try to answer it.

Today I went into battle. On the front line. I pushed back into enemy territory. My efforts were resisted but I persevered.  I took ground that was being strongly defended. I claimed it for my severely Dyspraxic child who needed a service that was being denied. Today I was brave, but I was scared.

Today I was a Soldier.

Today I changed a broken feeding tube, in an emergency.  I bathed an open wound and I administered yet another new medication. Today, as every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a Nurse.

Today I learnt all about Proprioception and how understanding it could really help my Dyspraxic child. But first I need to learn to say it. Today was enlightening.

Today I was a Student.

Today I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found Platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. Today was magical.

Today I was a Storyteller.

Today I gave my child a haircut at home. A trip to a hair salon too distressing for a child with sensory issues. Today my home became a salon. One with toys and television and iPads. Today I felt like I achieved the impossible.

Today I was a Hairdresser.

Today I trawled the internet. Endless articles on Down’s syndrome, on Dyspraxia, on Sensory Processing. Today I drank a lot of coffee.

Today I was a Researcher.

Today I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. Today I had fun making toys that would help my children make sense of the world around them.

Today I was an Inventor.

Today I attended another appointment to discuss the needs of my children. The sixty something appointment this year. Yes, honestly. I’ve counted. Today I was early.

Today I was an Advocate.

Today I wrote a blog highlighting the discrimination faced by those with Down’s syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome.  I tweeted my MP. Today I got angry.

Today I was a Campaigner.

Today I watched my anxious child find new confidence in an activity she had previously not coped with. Today was brilliant.

Today I was a Cheerleader.

Today I lost count of the phone calls I made, the emails I sent. Today I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. Today I despaired.

Today I was an Administrator.

Today my glass is half empty. Yesterday, it was half full. Tomorrow is a new day.

Today I am thankful for the glass.

Today I met with Trainee Doctors and told them about life with a child with Down’s syndrome. Today I busted some myths.

Today I was a Teacher.

Today I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. Today I tried hard not to cry.

Today I was a Wrestler.

Today I cradled my child as she drifted off to sleep under anaesthetic for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.  Today I could not do any work.

Today I was broken.

Today I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals. Today I thought my heart would burst.

Today I was the happiest woman alive.

I am a mother to two amazing children,  both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!

 

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Abracadabra

 

Magic photo (2)

Abracadabra

This afternoon, my 9 year old daughter rediscovered her Magic Set, a gift for her birthday some years ago. A happy hour or so followed this discovery as she relearned and performed some old tricks. Tricks made trickier by her dyspraxic brain, we none the less cheered and applauded her with “wow” and “amazing” and “how did you do that?” Ignoring a dropped card here and there or the not so slight of hand that kept revealing its secrets, we allowed ourselves to be thoroughly entertained by her enthusiasm and joy.

Magic.

We smiled as we recalled her much younger self with the same magic wand. Sent to her room for some misdemeanour or other, she slammed the door, waving her wand as she did so, shouting those magic words “abracadabra, make everything MY WAY!” Her foot stamping in time with the last two words.

In a year when she has discovered that Santa isn’t real and the tooth fairy is not to be trusted, you’d be forgiven for thinking that our house is now devoid of magic.

In the words of CS Lewis, there is a magic deeper still…..

It has nothing to do with fairies or elves, magicians or illusionists.

Before I was a mum I would imagine magical moments like this: happy parents swinging their toddler on the count of three as they walked along a path to a park. A familiar scene, but one that, in reality, never happened. Neither of our children could walk when they were toddlers. The shout it from the roof tops moment when my first born took her first steps as a 3 year old was soon eclipsed by another. The deeply personal moment she stood up at home, later that day, and whispered proudly to herself “I can walk”.

Magic. Deep Magic.

The magic happens when we least expect it. Like it did yesterday.

Yesterday, Hazel walked hand in hand with us, her parents, very slowly along a path for the first time in her life.

Nothing remarkable or magical to the untrained eye. To the non believer, there is nothing to see.

Hazel is my almost 7 year old daughter who has Down’s syndrome and cannot walk by herself. Hazel is wheelchair dependent.

Deeper magic.

And, just a few days earlier, this same magic had appeared at bath-time. Her favourite toy that blows bubbles and plays a tune had stopped working. The bubbles had run out. A regular occurrence. Usually Hazel would simply turn away and look for something else to play with. Not this time.

Magic was in the air.

She turned and looked up at me. Directly. Urgently.

Mum you need to fix this for me she said.

Except she didn’t say a word. She can’t. She does not yet have the words to tell me when something is wrong or when she wants something.

But she looked at me. For the first time in 7 years she told me what she wanted by looking at me.

Magic. Deeper magic.

I’ve been taking a break from blogging and some social media recently. Not because I don’t like it, the opposite is true. But having my head in a screen as often as I was meant I was in danger of missing the magic. I want to be fully present in these moments. They are a long time in coming and all the more magical because of that.

When a child reaches a milestone it’s always a magical moment.

When a child or person with a disability reaches a milestone, or does something they have never done before it is beyond magic.

Deeper magic.

 

“There is a magic deeper still that the witch did not know”

CS Lewis, The Lion, The Witch And The Wardrobe.

 


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Windmills and Bicycles

I love the Chelsea Flower Show. Glorious, decadent, sometimes ridiculous, but always sumptuous. A televisual feast that I dine out on each May. A week long explosion of colour in my living room (I’ve yet to actually go there). Designers clamouring for hard won awards from the judges. A label to be proudly displayed for all to see, opening doors to further fame and success.

Inspired by this sublime, horticultural festival I annually turn my attention to my own patch of ground or ‘garden’ as it’s rather hopefully known. I imagine how I will transform it into my own haven of tranquility; one with an edgy, urban, free flowing design, softened by wispy aromatic planting and ethereal water features. Award winning. Gold Standard or at least a Silver Gilt.

But not today.

Today the paddling pool is out. A large blue inflatable bath sits slap bang in the middle of the lawn. Well, perhaps lawn is a little optimistic. But there’s definitely grass, of varying lengths. Quite a few patches of the stuff in fact.

There is a border…of sorts. Hardly wispy though. More weighty. Overgrown even. A tree or two. A couple of swings, a small trampoline and a shed.

Oh. And a windmill.

A bright, colourful and very large plastic windmill.

You see, the garden of my dreams is not the garden of my reality.  The garden I envisaged is not a bit like the one I actually have. A different reality.  Not how I imagined.  A bit rough around the edges in places. Needs maintenance.

The garden I have is magical.

Yesterday, she made the windmill spin. My daughter has never done that before. The windmill I purchased on a whim from a cheap and cheerful retail outlet just the other day.

She’ll enjoy looking at that.

But she did more than look at it. She made it spin. She actually made the windmill turn. Over and over again. An action that most children would learn to do in a heartbeat has taken her years to accomplish. It does not matter. She did it. And she loved it.

Our garden is a safe place for a child with Down’s syndrome.  A place for her to be. To feel, to smell, to touch, to taste, to explore. Our garden is her space. A safe space. A nurturing space. A joyful space.

It’s also a place where her older sister can be herself. It’s where she can, if she chooses, practice riding a bike – away from the quizzical looks of others. She has yet to be able to ride a bike properly. Dyspraxia – a life-long developmental condition – has recently been added to the list of our own awards. Another formal label now appears at the top of the endless stream of hospital letters that we receive; I’m not complaining – labels can help open doors to a different kind of success. Dyspraxia makes the things that most children take for granted so much harder for her. Climbing, swimming, running, jumping, riding a bike or a scooter – they are all typically huge challenges for a person with Dyspraxia. It also brings with it a host of daily sensory challenges and stresses.

Our garden is her safe place too.

We are soon to have some long overdue landscaping done. Some order is most definitely needed, I have to admit.  A patio would be nice.

Chelsea is glorious. Perfection. But in many ways it’s an illusion. Temporary. Taken down once the cameras have been switched off.  For most people, their gardens are not like that. And, as much as I love Chelsea, I am sad at how it leaves me feeling when it’s over. As though my garden isn’t good enough. Defective. Less than.

Our garden is not a Chelsea garden. Yet, despite perceived flaws in its design it brings great beauty and depth to our lives. Sometimes chaotic, sometimes peaceful. It is an ever changing landscape that challenges me and captivates me at the same time. It is a tough but beautiful place to be. I want no other garden.

I think Chelsea is perhaps selling fake flowers. Artificial.

Someone told me once that I could aim for perfection with my unborn child. By not having her. By ending her life before she was born and trying again for a better one. A gold standard, award winning one.  I like gold, I really do.

But I prefer windmills.

Hazel and windmill