Today I cleaned the blinds, slat by slat. Wiping away layers of dust, marked with fingerprints that have gathered stealthily. Unnoticed. Hidden until they were not.
I noticed them first thing. Shafts of early morning sunlight exposing eachtinyparticle. Each mark, each imprint. Light has a tendency to do that; expose things.
I noticed one of the blinds was broken. Not functioning as it should, no matter how much I tugged or pushed or pulled. How long has this blind been like this? I’m not sure if anyone else has noticed, perhaps just me.
Anyway, I think I’ve got away with it. A broken blind can wait, there are other jobs ahead in the queue. It’s not something I am able to fix, I don’t have the resources, time or skill. But at least cleaning it today helps take my mind off the fact that I have been unable to fix you.
You and I are good at waiting; long overdue appointments they said you badly need. Another day, another week or month, even year; I lose track as the dust continues to settle. For the present, I’ll find something else in our lives to polish, clean or mend. As it remains one of the greatest of honours in my life to do everything I can for you.
I began by naming this poem “Broken” but then I remembered: I’ve pitched my tent in the land of hope.
You noticed a patch of sunlight that fell out of nowhere and streams across the kitchen floor. Down on your knees, you try to hold it in your outstretched fingers. You feel its warmth. Still, it fades, but still you noticed. Do you wonder, where it has gone?
You noticed the ornamental grass billowing softly. With the lightest of touches your outstretched hand felt its gentle caress. ‘Maygreen‘ plumes that sway and bow with the wind. I marvel at how they do not break or snap under pressure from the next, unpredictable gust, no matter how far they bend. I am jealous of their resilience. I planted this for you last summer, it is there by design, as are you. And you have noticed.
You noticed the coarseness of the brickwork. At the side of the house; a passageway the rest of us routinely hurry on through. There is nothing to marvel at here; no plants, no colour, not even a blade of grass. Just bricks that form a wall, against which we discard our rubbish. You stand there, outstretched arms guide your faltering, supported steps until you find your spot.
The same spot as you found yesterday and have returned to today. Sunday.
You have noticed something there the rest of us cannot see. I am looking. Briefly, I look but I cannot see. Yet you can. Even with the poorest of vision, through dense and clumsy lenses, your clouded view of this world is still clearer than mine.
We cannot see what you see.
We cannot see because we cannot feel. The way you do. Arms, fingers, toes all outstretched and full of questions. Taking untold risks for the greatest of discoveries. Knowing so very little, you learn so very much.
What if you never climb the heights of Everest, or study Botany to gain a degree? Your experiences, your learning, is not confined to these worthy pursuits. I have this joyous, delightful feeling that you have noticed more on a Sunday in May than all the world’s explorers, scientists, adventurers, academics and me.
The world of you is noticed.
This glorious, marvellous, painful and dangerous world that has within its lifetime, a whole Month of Sundays, likely more.
What’s the correct name for it?The sparkle you get on the surface of the sea especially in summer…… as sunlight catches the ripples, usually on a calm day. A gently moving carpet of glittering diamonds, shimmering and shimmying as far as the eye can see.
I’m not sure there is a name for it. It’s far too beautiful a sight to be contained by a single word. It takes my breath away every time I see it, which is not that often as I do not live by the sea.
I wonder if I would tire of this sight if I did? It’s a sight I long to see every year. Most years I’ve been blessed enough to see it. It makes me smile. Every single time.
I don’t have a Bucket List. You know the sort of thing, a list of places I want to visit in my lifetime, and or experiences I want to have at least once before I die. A cruise perhaps, or a trip to the Northern Lights. I’ve never fancied jumping out of a plane but I wouldn’t say no to a Trip on The Orient Express. Or Vienna. I’d quite like to visit Vienna. But I don’t have a Bucket List. I don’t really have a list at all.
Bucket lists are hard to fulfill when you are the main carer for someone you love. A list filled with experiences that may never happen simply because to make them happen would require the movement of both heaven and earth for most carers and the one(s) they care for. I don’t think many would deny that being an unpaid carer involves a level of sacrifice and loneliness that most people will never have to give or experience…unless they become one themselves, that is. Not only that, but the name Bucket List doesn’t sit well with me, it feels sort of depressing; though of course I know that one day I will ‘kick the bucket’ like every other mortal on the planet.
Personally speaking, having a Bucket List is a pressure I can happily live without. Don’t get me wrong, I would love (I think) every one of those experiences I mentioned and may have dreamt about as well as more, should they ever come my way. For now, and for the foreseeable future (which is a strange thing to say I always think, because the future is not really foreseeable for any of us) I am content to enjoy those experiences that often come with no name but that make me smile, make me catch my breath. And there are some I don’t enjoy at all that are also to be collected, valued even.
Some happen to me occasionally, like visits to the seaside. Others daily, hourly. Often.
Like the moment my daughter, who has Down’s syndrome, laughs out loud at who knows what. It’s a mystery but it’s very funny.
Or the moment she is given shoes that don’t rub her little feet red raw anymore, along with splints that fit correctly. She marches off, instead of hobbling. Her legs still tire, and when they do she beams as she sits back into her wheelchair. She cannot tell me her joy or her pain in words as she has none. These moments sparkle as much as the sea sparkles in the height of summer.
Or the moment her sister instinctively helps her off with her coat or shares an armchair with her. Though she shares more than an armchair; she shares her time, her attention, her love. Getting back in return seemingly nothing sometimes, but in reality everything and more. What is the name for that? Some say siblings of people with Down’s syndrome suffer. They give it a name, even though they have never sat in the same armchair, or taken off her coat. How dare they so falsely name an experience of which they know so little.
Sometimes it is the moment just after another procedure, operation or clinic appointment. Heart heavy with loving her through yet more trauma. Hers and mine. Tear stained walks along hospital corridors, telling myself and her “It’s over now, it’s ok, we’re going home”. Knowing that it’s only over until the next time. Knowing that it doesn’t really get easier.
Even the kindness of the medics can be painful and I have been known to crumple.
These moments are harsh, but they are also profoundly beautiful. The love swells, mingled with pain, making it ever more precious.
Oh but I do have a Bucket and I am very fond of it. It’s not shiny, it has holes and probably needs a good clean. Yet it is filled with experiences I would never have imagined possible before I was gifted the responsibility and privilege of caring for this disabled child and her sister.
Many of these experiences have no name, some are incredibly painful, others joyful beyond measure; and I treasure them all.
Downright Joy 