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Peace in the Epilepsy Storm

Peace in the Epilepsy Storm

There have been a few times when I’ve been pulled up by the bootstraps and have felt like I’ve been told that everything is under control and that worrying about things isn’t actually a productive or helpful use of my time or energy.

That hasn’t always been an easy message to receive or learn, but I’ve been regularly provided with clear examples of how that peace can ease our sometimes-troubled hearts and minds.

A while ago our son James reached a hat-trick that we had really hoped he would avoid. Having been diagnosed aged two as Autistic and with Learning Disability, he was given a third diagnosis to add to the list aged 15; Epilepsy.

Now this didn’t come as a complete shock; a few weeks previously James had had a tonic-clonic seizure, the first we are aware of him having, and looking back we remembered a strange report from school a few months before where James seemed to go blank and stare vacantly into space for about 30-seconds before snapping out of it and carrying on as normal.

We now know that this was likely to be an absence seizure, another form of epileptic event. All of this led to the meeting with the Paediatric Neurology Consultant at Poole Hospital, who formally added Epilepsy to James’ diagnosis list.

Now it would be remarkable if this hadn’t worried us, cause us to be even more concerned about James, how this might affect him, what the future might bring.

But in the storm we sensed peace, partly due to having some answers, significantly because of our faith and trust in God.

That evening, as I was ordering anti-suffocation epilepsy pillows, thinking about different types of room monitors, mentally assessing whether there were any hazards in James bedroom, or his den, worry started to creep up on me again; but that peace got there first before my worries overwhelmed me.

I woke in the night… had I heard a noise? Was James OK? I lay listening to the quietness of the house and as I berated myself for being over-anxious, once again God’s peace was there.

His peace comforted and relaxed me. He’s got this, it’s in good hands.

Now not worrying is not the same as not caring. Of course we care greatly for James, we love him dearly and want the very best for him. But does lying awake at night worrying about his epilepsy make it go away?

Does it help us to help him? Does it make any positive difference at all? No… all it does is make us tired, anxious, stressed, and less able to care effectively for him.

In every way, worry is counterproductive.

Not worrying isn’t easy, but we trust in God to help us and we believe he will.

We can receive his peace, his comfort, his rest and that will help us to be much more effective in helping James that any amount of worrying will!

Just like the journey we’ve been on since James was two and received his first diagnoses, God will use our experiences to strengthen us and to equip us to help others this time too.

This may not be a path that you can tread, you may not have a faith that you can turn to, but in whatever way you can try to find the peace that putting worries to one side can bring.

It’s not easy, but worrying isn’t going to achieve anything positive, it can and will only make things seem worse.

Do everything you can to care, do everything you can not to worry, they are very different feelings.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Mark Arnold

Meet Our Blogger

Mark heads up Urban Saints pioneering additional needs ministry programme and is co-founder of the ‘Additional Needs Alliance’, a learning and support community. He is a ‘Churches for All’ partner, a member of both the ‘Council for Disabled Children’ and the ‘Living Fully Network’, and serves on the executive for ‘Children Matter!’ Most importantly, he is dad to James, a 17-year-old Autistic boy with Learning Difficulties and Epilepsy.

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