Downright Joy

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


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Shopping lists and signing for deliveries has been the extent of my writing achievements lately.

Weeks of Hazel’s poor health and the sudden serious illness and subsequent loss of one of my dearest friends has stopped me in my tracks. And, though the words have not come so easily, I have at least had some time away to stop and reflect.

Last week we found ourselves on an almost empty beach, having arrived late in the day. The sun was casting long shadows across the beach and the sand was still warm underfoot.

Hazel loves the sand. Did I say she loves the sand? She LOVES it!

The moment we placed her down on the picnic blanket she was off. At speed.

For a child that cannot walk or even stand unaided this was a sight to behold as she bottom shuffled away across the beach. Arms raised as she went; chasing after the long shadow her tiny frame was making in the evening sun.

Have you ever seen the tracks that are made in the sand by baby turtles as they head for the sea? With all their might they propel themselves forward, their little bodies longing to be in the water where they swim freely. A trail of wavy lines in the sand; evidence of their struggle and determination to reach their destination.

Hazel left similar tracks as she crossed the sand.

Before we arrived at the beach we had been in a children’s play area.

I generally hate play areas.

Mostly because they are a reminder to me of what both my children can’t do. My eldest has her own physical struggles with hypermobility. Play equipment has been a huge challenge for her, not least because most of her friends can use it with ease.  In Hazel’s case it is often simply inaccessible. Though some playgrounds are more disabled friendly than others, largely their equipment is off limits to her.

Yet here, in the sand, Hazel had freedom. She was not hindered in any way. It didn’t matter that she could not run or walk or even stand up on that beach. Hazel took enormous pleasure from what she could do, from all she could enjoy in her own unique way. She didn’t need toys. A bucket and spade was of no interest to her. The feeling of the sand in her fingers and toes was enough to keep her attention – for hours! She did not tell us how much she was enjoying herself. She can’t do that – at least not verbally. But the joy on her face and the fact she did not turn back for reassurance told us all we needed to know. Hazel was happy. She had all she needed.

Hazel does not eat food. She is tube fed. Food holds no interest for her – yet. But sand….sand would go into her mouth quite happily. And, by the time we left the beach later that evening, she was literally covered from head to foot. Almost camouflaged.

The turtles eventually reach their destination, though it is a perilous journey, full of struggle. They don’t give up. And, once there, they swim freely.

Hazel will eventually reach her destination. She will eventually walk, she will eventually eat. She will eventually talk – even this week she had made advances with this. I, on the other hand, have felt like giving up recently. Too many sadnesses and difficulties to face. I haven’t wanted to keep going. Yet Hazel, as ever, is my little joy giver. It’s hard to stay sad when she is around. And she teaches me so much about perseverance and courage. Hazel doesn’t give up. She chooses joy and is content with simple pleasures.

My dear, precious friend, Vicky, for whom I, and so many others, now grieve, made it across the sand. She reached her destination – far sooner than any of us would have wanted or expected. She knew where she was going and lived her life in the light of it; constantly urging others to make their lives count. Her faith in God permeated every part of her life. Heaven was so real to her, and, when the time came, I don’t think she was afraid to go there. The tracks she has left are permanent ones. Life changing even. I thank God for her, but I miss her so very much.

Hazel is a little further across the sand this week. And so am I.


In memory of Vicky Taylor, who made every second of her one precious life count.

Miss you so very much, but I know you’re having a ball x

Vicky Taylor photo


Author: DownrightJoy

Married. Mum of 2 girls, one of whom has Down's Syndrome & Autism, the other Dyspraxia/ASD. Follower of Jesus. Finding joy in unexpected places.

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