What it feels like… to be the mother of Muir.

By Ann Maxwell, Edinburgh.

He was Heaven sent – but he is not without his challenges.

Born 9lbs and 2oz, a perfectly healthy bouncing baby boy, when I looked at the other new borns I thought I had been delivered to the premature baby ward at the Simpsons in Edinburgh.

Muir was a bruiser by comparison. He wasn’t beautiful. He was too big to be that with a full face and squashed up nose, he looked like he meant business with the world. And so, naively I took him home expecting my second born to follow in the footsteps of his older brother Connor who had been an easy baby.

Muir had his first seizure when he was just 4 months old.

I had never seen a seizure before and I knew nothing about epilepsy. When we rushed him in to hospital that night I had no idea that we were about to embark on a journey that would alter the course of our lives forever.

At the age of one Muir knew the colour purple. When he was two it was forgotten. Muir has a severe form of epilepsy called Dravet Syndrome and that life-time of a legacy of seizures has left him, now aged 17, quite profoundly brain damaged. But there is still much to celebrate.

Sometimes I look at Muir and I see a normal boy. He would have been a fabulous rugby player just like his brother Connor. His sense of humour is fantastic. His temper is wicked.

I am the proud mother of three handsome sons. But I am not the best mother of a child with special needs. Sometimes he really challenges me and I find myself in a place I don’t really want to be.

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Muir is 17 years old and still we do everything in Muir time. He must never be rushed, everything must be ‘just so’ before we move on to the next thing. I buy him Thomas the Tank Engine for Christmas and he watches Jungle Book over and over again. Peppa Pig and Tots TV have been amongst his favourite TV programmes since he was a toddler and he loves to play with bubbles in the garden and kick his many footballs – 30 at the last count!

Sometimes all of this is difficult for me to reconcile.

He has endured so much since his first seizure at four months old. I am amazed that he is still with us. Muir can’t speak like a normal boy, or care for himself and he has a limited understanding of the world – but he is still learning. He is still growing up.

Connor (20) and Rory (16) are fine role models for Muir and are devoted to him. They love him dearly but sadly, for them, they have been Muir’s child carers. They have taught him many things – how to laugh, how to run, how to kick a ball and how to rough and tumble. Muir, in turn, has taught them that it’s okay to care.

Sometimes he gets angry. He has unseen seizure activity that brings on aggressive behaviours. He has the strength of a young man now – he is definitely stronger than me. I am always the one who says “no” and consequently, I am the one he will strike out at. But sometimes it’s our fault, we let him down by making promises we don’t keep, like a visit to the duck pond or the butterfly farm. He is the elephant that never forgets!

Our respite comes in the form of school where Muir lives four days each week. It broke my heart the first time Muir stayed there but he settled in quickly.

It has been a joy to watch him learn and grow over the past six years as his levels of independence have soared and we have been mesmerised by his new found achievements. We love our weekends together now and our occasional holidays abroad. I never imagined a holiday abroad as a proper family would, one day, be possible.

What the future holds for Muir beyond school no one knows. I would like him to live at home but that would be too selfish. Just like Muir’s brothers, I must let him go. After all, I have fought for him to live and to learn like other children and he is doing so well. I cannot take that away from him now.

But where do young people like Muir transition to when they leave school?

There is much to celebrate in his achievements but ‘care in the community’ is a bridge too far for Muir. He is a young man who does not relate to our world and must be protected from it. He requires a highly structured and stimulating environment that will enable him to live happily and be fulfilled in his own way at his own level.

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At a time when Governments are taking away residential care homes I find myself in search of one, an essential requirement for our son’ s long term well- being – and dare I say it, our own too.

The Muir Maxwell Trust

Ann and Jonny Maxwell have wrestled with 17-year-old Muir’s severe epilepsy since he was four months old, with little help and no one to turn to. Muir turns 18 in January 2015.

In 2003, recognising this lack of support for children and their carers, they established The Muir Maxwell Trust (MMT).

From small beginnings in Ann’s study in their Edinburgh home, the Trust has emerged as one of the UK’s leading charities supporting paediatric epilepsy. In almost 12 years it has raised over £8m.

The Trust provides much needed practical support to children and their carers struggling to cope with this devastating condition, whilst raising awareness and understanding of childhood epilepsy.