Youngest-ever What Matters? winner writes about death of a much-loved cousin

Writer Amelie Brown: “Her days are full. Her days are empty.” Photo: Sally TsoutasShe is woken by a pair of freezing little feet slithering through the bed to find her own.
Nanjing Night Net

Her eyes are yet to open before her eldest daughter strides in and declares that it is library day at school. Suddenly she notices that her one-year-old son is beckoning at her from his cot. This day has begun for Katrina. This day, like other days, like every day, is hectic, chaotic, crazy but full of love.

When three little voices are battling each other for her attention, it isn’t easy to respond to all of them. But she tries. She tries her best because she loves all three.

Her days are full. Her days are empty.

There should have been four. It matters that he was here. It matters that he is gone.

To Katrina, Ben was pure joy. He was born on the 7th of March 2006 and he was perfect, as was her love for him. She relished every gurgle, gaze, giggle. She cherished her time with Ben and lavished him in immense, deep love.

A first son, a first grandson, a nephew. All round, celebrations were abundant. To me, Ben was a cousin and a playmate. He was a promise of years of grins, games, jokes, but most of all, a friend.

The innocence of this bliss lasted three months. Then came diagnosis day. The specialist declared with jarring certainty Ben was going to die. He was a victim of SMA (Spinal Muscular Atrophy) type 1, a genetic disease that would rob him of his ability to move, feed and eventually breathe.

Ben died at the age of 11 months – 80-odd years too soon.

He is not the only one. One in 6000 babies is born with SMA and one in 40 adults is a carrier of the disease. Unknowingly, innocently. Most of them are nor even aware of its existence, until it strikes their precious family. Once is does, they’re forever changed. Families all over the world have suffered through the devastating experience of losing their beloved child to SMA.

Ben matters. His birth, bringing him home, his beautiful soft skin. The way red balloons pleased him and he laughed at toy goats, his green dragon. The way he smiled at his parents. His trust. His SMA, his feeding tube, his death. He is remembered and he matters.

After a seemingly endless day, Katrina lays down in bed and slowly closes her weary eyes. This day has ended for Katrina. This day, like other days, like every day has been hectic, crazy, chaotic but full of love. The three little voices are resting for the night. Tomorrow she will hear them again.

She is rich. She is poor.

Tomorrow he will still be gone. But he will always matter.

Amelie Brown is a Year 5 student at Sutherland Public School.

This story Administrator ready to work first appeared on Nanjing Night Net.

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