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A break away, or near breaking point?

A break away, or near breaking point?

Holidays are fab, right?

Time away from the hustle and bustle of everyday life, leaving all your worries at home, heading off to the sunshine to sip cocktails, read books and take a dip in the pool.

Unless you’re a family with additional needs. Holidays can still be fab, but they certainly aren’t always care-free (or carer-free!).

Our first break away with Heidi was when she was just a few months old. We had a caravan and Heidi had a list of medical extras. What was I worried about?

Well, as it turned out, I was worried about pretty much everything!

Bearing in mind it had only been a few weeks earlier that leaving the set-up of the spare bedroom (cot, suction machine, oxygen, nappies etc.) to venture down to the lounge seemed like a big deal, actually preparing to leave the house was huge.

I was like a woman on a mission though – determined to prove a point…of course we can go on holiday, we’re not going to miss out, no biggie blah blah blah!

We did make it away – with my spare chargers, lists of local hospital telephone numbers, more spare chargers, spare feeds, spare clothes, spare nappies, another spare charger – and it felt like we achieved what we set out to, but it was far from relaxing.

For example, we took a bottle of fizz, because it felt like that’s what people do on holiday, but we didn’t dare drink it in case we had to drive home or to hospital.

I was on edge in case the electric hook-up didn’t work and I couldn’t use the sats monitor. I don’t think I slept at all for keeping an eye on Heidi and making sure she didn’t miraculously escape from her Moses basket.

I’ll be honest, I was relieved to get back home.

The next time we went was a little better. I was getting less twitchy about leaving the house and started to feel more organised in terms of what we needed to carry with us.

Somehow, and I’m not sure exactly when, we got to a point where it was enjoyable. It felt “normal” (I don’t like that word, as what is normal really, but hopefully you get what I mean).

Heidi got bigger, and our caravan got cramped.

Plus, we couldn’t tow with our wheelchair adapted car, so we took the plunge and invested in Big Mo the motorhome. It was second hand and we had to have adaptions done, but we knew that without it, our breaks away would be harder to do.

There was a lovely spell where things just worked out.

Our packing routine was down to a T, and Heidi was still an ok size to be lifted easily (she’s non-mobile and non-verbal with a diagnosis of dystonia thrown in for good measure).

But, as is so often the case with little ones, Heidi continued to grow.

Chucking her over my shoulder and climbing up the steps to Big Mo (don’t tell OT!) started to get harder, her wheelchair got bigger, and our baggage started to bulge. 

We realised though that booking a more traditional holiday just isn’t that easy for families like ours.

We need a profiling bed (or at least a bed with secure sides – Heidi may not be able to purposefully move, but she does some amazingly big stretches in her sleep!); we need a hoist; we need a wet room and a changing table; we need space; we need wide doors; we need ramps; we need ground floor accommodation or a lift; we need a break!

There are some brilliant places out there – we recently found a gem not too far away and had a lovely weekend away with friends, but truly accessible places like that seem to be few and far between, or expensive, or booked up months, sometimes years, in advance.

It feels like there was an optimum window with Heidi where she was well enough, and small enough to get away relatively easily.

I am of course super grateful for that.

Holidays are an absolute extra, and lovely if or when they can happen.

I do sometimes think that going forward it will be less stressful (and far cheaper!) to stay at home with Heidi, where everything’s set up and I don’t have to worry.

Maybe we’ll just pretend we’re away, now where’s that cocktail menu…

Firefly Blog

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

Sarah Kay

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An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and support others who may be on their own journey.

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