“Always wear a lifejacket, it could save your life!”
Living right on the shoreline, we have learned to have a healthy respect for the water. For all its beauty, the sea is a powerful and dangerous thing. If I was the boating type, I would know that without a well fitting lifejacket, I would struggle to keep my head above water if I went overboard.
Given that I am absolutely terrified of ferries, yes ferries (thanks, TV news, for imprinting the Debrugge disaster into my brain at a young tender age), there won’t be much boating action happening anywhere round here anytime soon. But if I was to step onto a boat, I would certainly be doing so with my lifejacket fastened tight.
Sometimes I have likened our experiences of raising Orange to what I imagine it must be like to sail the high seas, if you are a sea-legged kind of person. Periods of calm, serenity, beauty, a feeling of deep connection with what life is all about (and, of course, rather a lot of fun), interspersed with raging storms that you have no choice but to keep your head and steer your ship through if you want to make it to the other side.
Life can be like that for any of us, I know, but in raising Orange we know that he will be dependent on us for life and we must equip ourselves for many a storm to come.
As Orange has got bigger, we have learned that we cannot do this on our own.
For the last few months, we have been testing waters of an entirely different kind. Orange has been going to stay with a respite carer for an overnight stay or two. He has just returned from his longest stay yet – two days and one night – that for the first time we were not too exhausted to enjoy.
For the last two days, while Orange has been waited upon hand and foot, utterly spoiled, and taken out to enjoy the winter sun at Mount Edgcumbe, Bea, Gavin and I have made the most of doing some of the most un-wheelchair-friendly activities we could find.
We have climbed lighthouses. We have ridden bikes. We have walked the seafront. We have swum, splashed and goofed about in swimming pools. And we have eaten rather a lot of ribs. And ice cream.
The time we have spent together has been golden and we have cherished it because we have been able to focus on Bea. And on ourselves. In a way that we never can when Orange is with us because his needs always have to come first. As they should, because he is the least able to help himself, but as much as I love us all being together and experiencing things as a family, I will be the first to admit that it is hard work.
Which wheelchair shall we take – the all-terrain or the one that actually supports him? Will the wheelchair get in the door? Will there be steps? Will it be warm enough for Orange? Will it be too noisy? Will there be any food we can feed him? Will there be anywhere to change him? What will we do if he doesn’t cope? Bags, medication, drinks, spare clothes, iPads, wheelchairs and an Ernie are minimum requirements for a family day out.
Sometimes it goes well, sometimes it doesn’t, but I don’t think I realised until we had a day out without him, how I am always on high alert and how this can impart an underlying aura of tension into any family activity, no matter how familiar or fun it might be.
Having a day just with Bea meant we could do things on a whim. It’s sunny, great! Quick trip to The Hoe.
Oh look, the lighthouse is open, shall we go up it, YES!
In our enthusiasm, neither Bea nor I remembered until we were halfway up and fully committed to the task, that we both harbour a fear of not only heights but tight spaces. Imagine our joy when we realised, half way up, that it was getting narrower and narrower, steeper and steeper… but because we could focus solely on each other, we worked our way through those fears together.
One step at a time, we climbed. One foot in front of the other, until we reached the top.
As a sibling-carer, Bea has learned too young that life can be frightening and unpredictable. That people get sick, and sometimes they die, and not always because they get old. I know she feels the weight of unpredictability in our lives and has taken on more responsibility that she should have for keeping us all afloat.
She has also made some big sacrifices in her life. Age seven, she knows how to give CPR and call an ambulance but she doesn’t know how to ride a bike. With respite care, we can ease some of that burden for her, and for ourselves too. As well as climbing a lighthouse, we were able to take Bea out to ride her bike today for the second time ever.
It’s taking a lot of adjustment to get used to sending our little boy away while we go off to have fun without him. I won’t pretend that I haven’t been eaten alive inside by guilt about that and I won’t pretend that I don’t feel sad when he is not with us.
And I wish he was right there with us, climbing lighthouses, riding bikes, and splashing and duck diving in the pool. But we have to be honest with ourselves, and fair to each other, in recognising that this isn’t the way our lives can be. They just can’t.
Without respite care, we would be overwhelmed and overwrought. Exhausted. And totally unable to steer our ship through the storm when it comes.
When I am feeling guilty about sauntering easily down the seafront, gazing out to sea and chatting to my little girl while my little boy is being cared for by another, I have to remember that actually it’s good for him too. If he is to have independence, relationships, freedom and confidence in his world he must learn that, with careful choices, he can have fun and be safe outside of his immediate nuclear family.
He has a right to adventure, too. I mean, just look what he gets up to when we’re not around.
“I knew, when I met you, an adventure was going to happen”
Winnie The Pooh
Lifejackets on, folks.