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My job is to steady the ship

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

My job is to steady the ship

I’ve seen a few posts over recent months, referring to people in the pandemic being in the same boat, others saying that we’re in different boats but in the same storm; they both make sense to me.

Even before Covid, and I am guessing like many other families who have a child or children with additional needs, I felt it was my job to keep things together.

Throw in a pandemic, and I felt my role set up a gear – it was job to steady the ship.

We hit our first storm just after Heidi was born – thrown into troubled waters, that definitely hadn’t been forecast, scrambling to get our life jackets on so that we could keep our heads above water.

We managed, just, to cling on.

We felt like were drowning in the early days, swamped with information, and the odd big wave (in the form of seizures or set-backs) that would come crashing in to us, knocking the wind completely out of our sails, and sending us off course.

We coughed and spluttered, and we held on, tight.

Somehow, the waves calmed.

The view cleared.

We were steadily heading forward, and it started, at times, to feel enjoyable.

We became a cruise liner – slowly moving in the right direction, going at our own pace, and taking in the scenery.

Between us we became the cooks, the cleaners, the entertainment (fun is still really important, despite additional challenges!), the weather forecasters, the deck hands, maintenance, logistics…the list goes on.

We had our little crew around us too – a close knit team, who came on board to help us out, bringing supplies, and guide us to shore.

We also met other travellers who were, thankfully, happy to share their journey and the lessons they had learned along the way.

As the months and years passed, apart from the odd rough patch, our ship continued to sail.

Very much the Captain (well, Steve might have something to say about that I guess!), it became my role to keep things organized.

I often joke about “running a tight ship” but it really is how I try and keep sane.

If things are planned, I know what’s coming up, I feel better.

When bad weather hits (usually in the form of an illness or hospital stay for Heidi, but recently with Covid and shielding), it’s a feeling of having to hunker down, pull together, and know that calmer times will be coming.

It never ceases to amaze me though how in those times of needed (and even when you don’t realise you are getting into troubled waters), how quickly other ships will appear alongside you.

Without hesitation, and without thinking of their own predicament, the army of support is there.

Other families, other parents who simply “get it”.

They may be on a different boat, they may be experiencing the storm in a different way, but that all becomes irrelevant.

We are in this (whatever “this” may be) together, and we’ll do all we can to get through it.

Here’s hoping that better times are ahead, for all of us.


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