Downright Joy

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


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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 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

 

 

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