I have been half expecting a piece of news for the last twenty years.

Sadly it has finally arrived.

On the 7th of June 2001 our first Grandson [the Elder] was born. Almost straight away we became aware of a problem. He was having epileptic seizures like lightening storms in his little brain.

We were told that the prognosis wasn’t good and he may not survive the first few months. His parents weren’t having any of that negative thinking. They were going to love and mind him.

A year later we were told it was unlikely he would see his third birthday. His parents ignored them and fought on.

The years passed and Seán grew. He became a strapping lad, but those lightening storms had removed his ability to talk, walk or even control his limbs. Instead he talked with his eyes and with laughter. He required constant physical and medical attention but his parents fought on without hesitation.

Life for Daughter was not easy. So many activities were impossible because of the constant – “I can’t because of Seán”. That refrain was never a complaint though, just a reason. Daughter never once complained. The house was adapted for him with special electric hoists, an electric bed and a wet room. His room was filled with things showing his family’s devotion – balloons, sparkling lights and his favourite programme [Sponge Bob] projected on the wall or ceiling.

His health was never good. He needed constant medical attention and a fair chunk of his life was spent in hospital visits. Daughter trained as a First Responder and Paramedic. She became an expert in the fine arts of nursing and general diagnosis.

Last week Seán was ill once more. This was a regular thing so there was no panic. He had a stomach upset but was soon on the mend again. I called down to see him and he was lying in bed chuckling at Sponge Bob who was projected on the wall beside him.

Yesterday morning the call came. Daughter is like myself – not a morning person, so when I missed a call at nine in the morning I instinctively knew something was wrong. I phoned her back immediately.

Seán had just died in his sleep.

I can hear traffic on the road outside and the birds are fluttering around in the trees. Doubtless the village is thronged with happy children and weary parents. They don’t know about Seán so life is carrying on as usual.

But there is a new permanent little star in the night sky burning brightly.

You may not see it but we will.