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Hope For The Best

Hope For The Best

My go-to life mantra is to

Hope for the best,

Plan for the worst.

Potentially a bit pessimistic sounding I realise.  However, I find that I can cope better with emergencies and challenging situations if I’m as prepared for them as possible. Over the years we’ve had more than our fair share of emergencies and life-threatening situations; At 9 months old, Hugh developed a rare form of epilepsy that caused him to stop breathing for extended periods of time and required us to resuscitate him either with a bag and mask or through mouth to mouth.

My instinct initially was to cocoon ourselves in the house and never leave (except by ambulance) but that was no way to live. Hugh’s life threatening apneoas happened regardless of where we were – at home, in a car park, at a friend’s house, so if I ever wanted to leave the house again, I had to work out a way of doing it as safely as possible.

I planned for every emergency- where we’d pull in to resuscitate Hugh if he stopped breathing in the car, safest routes to take for an ambulance to get to us easily. I risk assessed every single situation and always had a back-up plan.

And so cautiously, carefully, we began to step out into the world; to try things, to do things, to start to live again.

We even went on holiday (in the UK), choosing a destination based on its proximity to a decent A&E.

This constant risk assessing and planning how to manage medical emergencies is second nature now. The first thing I did, when getting a new Apple Watch for my birthday a few years ago was to check if I could use it to call an ambulance from the back of the van. (I can).

All our plans are adapted, changed and cancelled dependent entirely on Hugh’s health needs, but we continue to take calculated risks and always hope for the best. That way we can ensure that we’re not controlled by fear and that Hugh (and the whole family) can continue to live as full a life as possible.

Transitioning out of this period of shielding, reminds me a lot of those early days of adjusting to the new, terrifying knowledge of Hugh’s life-threatening condition.  How do we try and live life to the fullest without being controlled by fear?  For me, that’s to fall back on my own mantra – hope for the best but plan for the worst.

As always, we’ll risk assess and plan and make decisions based on the needs of the whole family whilst being mindful of Hugh’s health.  We’re even hoping to go away for a week to a lovely accessible cottage by the sea. (It is, of course, near a hospital!)

Firefly Blog

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

Emma Murphy

Meet Our Blogger

I’m Emma, a special needs teacher and Mum to two boys and a slightly crazy springer spaniel. My youngest son has a rare genetic disorder called FOXG1 syndrome and severe epilepsy. I share our stories in the hope of raising awareness and acceptance of people with profound and multiple disabilities.

View Emma’s Profile

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