The Carer’s Road

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Every day is a journey,

and the journey itself is home.

Matsuo Basho

 From the moment we are born, a path stretches out before us. We don’t know where it will lead. We just begin, one step at a time.

Sometimes the way is a smooth, well-worn path and at other times it feels like we are cutting a path through rugged terrain. The road meanders, curving left and right, every turn revealing a new mystery or challenge. Sometimes we coast down hill only to struggle to reach the top of the next rise.

The carer’s road is a life long journey. We didn’t set out to be carers, but here we are, on a road that has contained curves, u-turns and uphill challenges. As the years go by, though, it can feel like we are caught on a treadmill. The days run into each other, a monotonous streak of repetition and predictability, with no reprieve in sight.

Life with Dan can be a bit like that. Every morning the routine is the same – the same steps, the same prompts, the same responses. Dan likes routine. Routine is good. It keeps everything ticking along like clockwork. Sudden changes in routine can cause all sorts of trouble when you’re on the spectrum. But it does feel like you will keep on repeating the same day, forever.

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When you are a carer, it can be tempting to feel that your life is on hold, that you are stuck on the bench watching, while life is passing you by. You see others moving on to the next stage in their life, breaking through glass ceilings, travelling to far-flung places, seeing the sights of the world and climbing Mount Everest. Meanwhile, we are still giving the same round the clock care and supervision. We can feel that life is out there somewhere, in the distance, for others to experience, and always out of our reach.

But this is not true.

Sure, the carer’s road looks different. Different can be good. It is filled with everyday miracles, outstanding achievements and more spills and thrills than a rollercoaster.

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I don’t need to break through glass ceilings. I am quite regularly sweeping up broken glass after Dan has precariously balanced the crockery on the edge of the shelf.

I don’t need to see the leaning tower of Pisa. Over the years we have seen many of the towers of Dan, some leaning, some standing perfectly straight, each one a master of architecture.

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I don’t need to climb Mount Everest. After many years, we finally made it to the top of the toilet training mountain. It was a long haul but the achievement was exhilarating.

Life is not passing us by.

This is our life and we are living it every day.

 

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