Downright Joy

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

Monthly Archives: March 2023


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Tagged

Photo by Marek Studzinski on Unsplash

I love her.

With every ounce of my being for every fibre of hers, I love her.

When I speak her beautiful name, Hazel; I love her.

When I think of her radiant face, her almond shaped eyes, I love her.

A violation of social norms; my love for her – my love.

How did I once believe I could not express or even feel this kind of love for her?

Who convinced me to ever doubt its existence?

Robbing me of those early precious moments.

Stolen time squandered on falsehood and fear; on Down’s syndrome, but not on her.

We were uninsured against such a heinous crime.

I love her precious, peculiar ways.

Pursuing unmarked pathways, she searches out joy.

Holding in her hands, the only navigation system she knows or needs: this moment.

Along these mystic trails I follow her, entering worlds of rituals and discovery.

A journey begun in hospital corridors that signposted a different way, on clinic walls painted with despair.

Uncertainty has become constant in our lives.

Walking hand in hand with each other and with faith, it is the only certain thing we possess.

Apart from my love for her, my love.

Under cover of prevailing gloom, we graffitied those hospital corridors as we left.

Tagged them with love as markers of hope, we committed our heinous crime.

#WDSD23 #DownSyndrome #Love #Hope #Humanity


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Monday’s Child

Photo by Daniel Watson on Unsplash

Monday’s child went to school,

As she does, as a rule.

She was quieter than of late

The teacher said.

I’ll keep an eye, said I

Tuesday’s child stayed at home, unwell.

As she often is: not well.

We passed the time

Singing songs in rhyme.

Tube feeding, tea drinking, clock watching our day away.

Wednesday’s child remained off school.

It’s never just one day, as a rule.

We built a den,

And dreamed of when

She would be well, not ill again.

Thursday’s child went back to school

Was this the right call or was I a fool?

It mattered not,

The door was shut.

Turned away, for no teacher was well enough to teach her that day.

Friday’s child is in the lap of the gods!

Her parents and teachers are in no way at odds.

But days lost mount; by a quarter, I counted up.

As Educators told by those in power to pipe down, get on, shut up.

In schools, in SEND, and in our home, a week is a mountain to climb and a very long time

Saturday’s child and Sunday’s child

Remain as before, weekend care needs refuse to yield.

But hope has space to grow; assisting with next week’s worries to beat.

Like will Thursday’s child be on repeat?

I’ll keep an eye, say I.