22.06.17

Summer’s here and the windows are open. A faint breeze floats into the room from time to time but mostly the air lies heavy and hot. Our daughter is not feeling well. She’s had a tough couple of weeks and today is most definitely a bed-on-the-sofa day with dvds turned down low. She needs focus and the security of knowing someone is close by but not swamping her. She’s had one dose of emergency meds and we are trying hard not to have to give her another. We don’t want her to build up a resistance to them.

Her new young carer has come to keep her company for a few hours and tend to her immediate needs. Dvd change, foot massage, wet flannel on face, hair brush, tasty wet food, drink (well,  prompts to drink), stories.  And quiet time.

We have a weekend guest and while I elect to stay at home to be on hand just in case, my partner goes out to show off the local sights.

From the living room I can hear gentle chuckles coming from our girl. I wonder what she’s watching. Or is her carer telling her a joke? Even at times of feeling so rotten she manages to find her sense of humour, although it’s true it’s often blunted by the fog that sweeps up and engulfs her. She has learnt to manage these times over the years, and us too, but it’s still feels hard.

Life goes on outside in the world. A dog barking is becoming annoying now. It’s gone on too long. Why isn’t its owner doing anything about it? Has the dog been left alone unexpectedly? The distant roar of traffic drones on beneath the constant birdsong emanating from the nearby trees and is punctuated by squawking seagulls flying by. There’s the odd sound of a human voice but it’s not yet barbecue time. I expect everyone’s at the beach. It’s getting hotter.

I sit looking out at the garden, thinking of our lot in life. And of our daughter. And of the world floating by around us.

The carer leaves and I take my place in the living room. Our girl has dropped off thankfully. Peace for her is so incredibly welcome in a world that can become overwhelming at times with its sensory overload and endless clatter. As I wait for her to stir I flick through the news sites on my phone. World events and those closer to home are grim.

I turn to social media. I am a member of several groups related to our daughter’s condition. I read the shared stories and snippets of other people’s lives and pick up occasional tidbits of information that may come in handy some time. Occasionally I add a brief comment but am mostly just an observer. We are all looking for answers but don’t always know the questions. 

Our daughter’s particular health problem is still a mystery. A couple of years ago we wrote to a well respected professor in America about it. He is often quoted in these groups. He responded by return, kindly offering an opinion and suggestions of what we might try. Of course everyone is different even if their diagnosis is the same. There are no easy solutions.

It seems the best “medicine” we can offer at the moment is what the carer today described as “home remedies”. She meant rest and relaxation, peace and quiet, comfort and security, care and compassion. We can do that.

My partner and our guest arrive home, full of tales of what they have seen – and of the immense heat. They’ve had a good afternoon out and about but are glad to get back to the cool and calm of the house. Our girl greets them with a smile as she wakens and gets off the sofa, restored and ready for the rest of the day.

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