Downright Joy

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


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Toy Story 3 (and a 1/2)

I love how uncomplicated children can be.

A question that I have heard many people in the Down’s Syndrome community ask is this:

How do you tell an older or younger sibling about their sister or brothers’ condition? 

When is the right time and what exactly do you say? How much will they understand?

I have an urge to prepare M for the day she is asked questions about her sister. I worry for her being given a hard time or even bullied because of her sister’s condition. How do I prepare her for other people’s sometimes negative or hurtful reactions?
What struck me very early on was that M saw nothing different about Hazel. I found this hard to get my head round. Some days, all I could see was the condition. Not every day, just some. So it was wonderfully comforting to see no recognition or awareness in my daughter’s eyes of this label. Hazel was and is Hazel. Or “baby ‘Azul”, as she would call her.

One day, I plucked up the courage to ask her the question I had been wrestling with. She was playing on the carpet with her toy figures.

“Do you know that Hazel has something called Down’s Syndrome?”

Ok, maybe not the most inspired of conversation starters. I was still learning. I held my breath, waiting for her reaction. In my head I was anticipating her urgent questions. How would I now define the condition for a 3 ½ year old?

I needn’t have bothered.

What is it?” She looked up, quizzically. “Is it a toy?”

I shook my head and laughed, mostly at myself.

 “No it isn’t a toy.”

And, before I could launch into my preschool definition of Trisomy 21, she had resumed play. Cinderella was heading off in the carriage to the ball. Prince Charming was waiting patiently behind a cushion and the Ugly Sisters were face down on the carpet. Their presence no longer required.

Her disinterest in my dilemma was overwhelming. Having established what was of most importance – that her sister’s (and I quote) “Down Dome” wasn’t something she should rightfully be playing with, M moved on.

Toys are everything when you are 3 1/2.

That day I learnt a valuable lesson about worry and anxiety. I wish I had not spent so long fretting over an issue that wasn’t. M will have her questions, no doubt. She will probably have to face those who are less than favourable about her sister. Yet she is growing up with an inbuilt acceptance of Hazel for who she is. It’s an acceptance that has always been there. No questions asked. No reason to be treated differently. Let’s just carry on playing and enjoying life, can we mum?

OK then.

Uncomplicated, humbling, love.

Sister not Syndrome.

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Disney Uncut

Disney is pretty big in my house. My 5 year old is working her way through most of the classics as well as loving the modern epics too. From Frozen to Fantasia we pretty much know all the songs off by heart. She is very familiar with the notion of frozen fractals, I, on the other hand, had to google them. Hakuna Matata is a concept we try to embrace and as for the Bare Necessities, well, perhaps the less said about those the better. There is one Disney classic that she has yet to discover. You may remember it if you are over the age of say, 35. The Incredible Journey. It’s a story of two dogs and a cat who embark on a journey across America to find their owner. (If you’re under 35 then you’ll probably recognise the remake version “Homeward Bound: The Incredible Journey”) Same sentimental story, different breeds, different names. Definitely Disney.

I watch my daughter act out the scenes from these films as she plays. Or rather, as she dramatises them from the living room, down the hallway and into the garden. She is desperate to go to Disneyland. She wishes she were Elsa. Or Anna, she’s really not fussed.  She wishes that real life was like a Disney film. So do I, or rather I did. Then, one day it happened.

Three years ago I was visited at home by my GP. I vividly recall his words as he sat on the end of my bed.

I had just brought my second newborn baby home from hospital. In truth, Hazel was nearly two months old by the time she was well enough to leave the neonatal unit where she had been treated for serious bowel problems. My first baby, M, had also spent some weeks in hospital yet bringing her home was different. A very happy occasion. Party time even. Our first longed for child at home after weeks of uncertainty about her health and mine. Tears of happiness and much joy.

This time was different. I felt no reason to celebrate. I thought it had all gone wrong. My baby was not supposed to have Down’s Syndrome. That was not a club I was prepared to join. As a woman of faith, I thought God had got it badly wrong.

It’s a strange juxtaposition. On the one hand, I was head over heels in love with my new baby. I had sat by her incubator virtually every day for the last two months. She was my baby and I loved her with all my heart. Yet the realities of bringing her home, out of that safe, cushioned neonatal environment where everyone cared and said supportive things, to suddenly being back in the real world where people sometimes stared, backed away from and condemned what they didn’t understand was terrifying. Combine this with the physical shock my body had gone through following another difficult pregnancy & c-section as well as the trauma of finding out our baby had Down’s Syndrome AND a daily 80 mile round trip to be at her bedside whilst still somehow caring for a two year old and perhaps you begin to understand just what state my health was in.

So it was that the GP was called after I collapsed in a heap on the living room floor and took to my bed, unable to face caring for my baby, whom I loved dearly.

He quietly listened as I explained why I couldn’t go on. Then, after making some suggestions as to the way forward (which included a helpful visit from a psychoanalyst as well as a psychiatrist to establish whether or not I could actually care for my baby) he then spoke the most powerful sentence and one that, even though I found hard to believe, I have never forgotten.

“You will meet some amazing people. It will be an incredible journey”.

Three years on and those words have never been truer. What felt like a nightmare, a very bad dream has become a life changing event. For the better. Having a child with Down’s Syndrome was not something I would have chosen. Most parents of children with Down’s Syndrome would probably say the same. And yet, here’s the incredible thing….despite the many difficulties and struggles along the way, Hazel has brought more joy into our lives than we could ever imagine!

Hazel’s infectious personality, her warm hearted spirit and her downright joy continue to brighten each day, not only for us but for others she meets.

She has taught us so much in a short space of time. We have learnt to love unconditionally. We have learnt not to fear or shun difference. We have learnt to celebrate even the smallest achievement or take time enjoying the simplest of pleasures in life. Through Hazel and, because of her, we have met some amazing people. People who are also on this incredible journey; people who also went through the same fears and struggles as us and yet they are living happy and fulfilled lives. People who have had to face harder, tougher struggles than ours yet who do so with grace and without bitterness. We have learnt to find joy in the most unexpected places. And, without denying or pretending that there aren’t some really tough times – it is much harder parenting a child with special needs than one without – I am excited about living the dream!  A dream of having a family of my own. A dream that took ten years to be fulfilled in M, who’s name means “wished for child“. I am blessed beyond measure by my two beautiful little girls. Nothing gives me greater joy than watching them play together, laugh together, create mayhem together and live life to the full together. I am thankful to God to be on this Incredible Journey. I’m also excited about starting a new one by writing this blog. And who knows? Maybe one day we’ll get to go to Disneyland too!

Copyright of all text & personal photos A.Morley.

All views & opinions expressed are personal.