On days like this, when the sun is shining, and the sky is an uninterrupted blue, particularly on days like this, I feel how my wings have been clipped more keenly than normal. I want to soar into that endless blue, but the burden I must carry is too heavy for me to ever do more than lift it a mere few feet above the ground.
I look at the windows that I never seem to get around to cleaning, the ever increasing pile of laundry, and the drifts of dog hair which I spend my life vacuuming, only to find that their curse can never be lifted, and I feel more a failure than ever.
How is it that I can’t even manage to keep abreast of even the most simple and mundane of tasks? I look at my friends’ houses; they are sparkling, even those belonging to mothers who work. And I wonder, do they secretly judge me?
On top of it all, I give myself the added pressure of writing books.
Why? Why can’t I seem to fit it all in? What is it about me that doesn’t match up?
This morning, it came to me, as I sat feeding Carys her breakfast. The difference between me and almost everyone else I know, is Carys.
How can that cute little quirk of humanity take up so much of my time? Am I just making excuses for my inadequacies? Perhaps.
But this is how it goes. How long just eating and drinking takes her, to give you an example. It takes anywhere from 15 minutes to half an hour, just to get her to drink 200mls of juice. I sit there, gently inserting the beaker into her mouth, dribbling a few drops into her mouth at a time, patiently waiting for her to swallow and prepare herself for the next mouthful, while inside I’m screaming with frustration, knowing I have to do this 6-8 times more that day. Because if I don’t, she won’t get all her medication, let alone meet her hydration needs. And if that happens, she will get so severely constipated that she will scream in agony for days. Not to mention the risk of dehydration to her heart condition.
Feeding is usually quicker, as she likes eating, and as it’s more solid, its easier for her to manipulate in her mouth. Twenty minutes usually does it. But don’t forget the snacks in between meals. I can’t just hand her a biscuit or a piece of fruit, as you might with any other 7 year old. Preparing her food is another matter. That takes time. It has to be mashed, or chopped. I don’t want to blend it, as I want her to experience texture and small, soft lumps; I hope she’ll learn to chew one day. Imagine the freedom for us both that tiny progress would make!
Nappy changing. Yes, we still have to do that. Probably always will. Although I would like to attempt toilet training this summer holiday. (Wish me luck! I only hope I manage to hold onto my sanity!) Changing a nappy doesn’t take long, I can almost hear you thinking. Well, you’ve never changed Carys. Remember that medication I was talking about? It turns her bowel movements to liquid. It seeps through her clothes, pools on the floor, gets everywhere. Including on her hands and in her mouth, if I’m not watching for it. That takes time to deal with. So does all the extra laundry. Yet I’m grateful for it; I don’t think she could ‘go’ at all if it wasn’t for that vile medicine.
Then there’s dressing her, several times a day, sometime. Fetching, carrying, strapping into wheelchair and loading said vehicle into the car, that is a fiddly process, when all you want is to nip out for a carton of milk or a loaf of bread. Putting on her fave Peppa Pig dvd, or music cd, most children her age can do all that and more by themselves. My boys were fairly independent at age 7, in terms of feeding, drinking, dressing, washing, toileting, entertaining themselves and using technology.
And of course, I am not just her mother, but her own personal speech therapist, physiotherapist and occupational therapist all rolled into one. Trying to get her to practice walking, learn how to use her hands, or balance without falling over, or lift a loaded spoon into her mouth, recognise picture cards or copy sounds I make, it all takes time. If I did more of it, maybe she would be walking/talking/signing by now. No matter how much I do, it never feels like enough.
I thought about all this over breakfast, and realised that everything I do for Carys takes up the time I would be using on all those other things that other mums do to maintain their homes and families. All those other things, which I am expected to do. Which I should be able to do. Which
occasionally build up into my own personal Mount Vesuvius.
Funny, that I hadn’t ever made the connection. Just immediately and always assumed a mantle of guilt and feeling of failure. I hadn’t even noticed all the Carys stuff I do. I J.F.D.I. And worry it’s never enough. And feel bad about my reluctance, my selfishness. It is the norm of my life. So this sudden realisation was a revelation.
Not that it changes anything. But maybe I won’t beat myself up about the chores not getting done, and my house and garden looking like the Clampett’s have moved in. At least for a while, anyway…
UPDATE: After writing this post, I took the ironing into the garden and did the ironing under the big blue sky with the sun smiling down on me, looking at the beautiful, GREEN view, listening to the music of the birds singing in the hedge. It was really lovely, and now there is no more ironing mountain, and I feel productive and relaxed!