21.02.18

It’s Saturday morning, early. My partner is sleeping after a period of wakefulness in the middle of the night. Our daughter is curled up in bed listening to audio stories. She’s been drifting in and out of sleep for a while but isn’t ready to get up yet.  I hear occasional chuckles emanate from her room.

I’m in the kitchen with my first tea of the day, gazing out of the window at the garden. It’s sunny and bright but there’s a sharp frost covering the ground. A scattering of crocuses is coming through. I wonder if it’ll warm up enough later so we can take our girl for a trike ride. She loves it so.

I relish this moment of quiet and calm and ponder on life’s rich pattern in my sleepy weekend kind of way. There’s no time for such indulgence during the week. No space to meander through random thoughts and cogitate on our place in the universe. Weekdays are for keeping an eye on the clock, charging around, keeping appointments at home and at work, dealing with an ever growing in-tray, trying all the while to maintain a healthy work/life balance, often with the odds stacked against such a thing. It’s not as straightforward as they say.

This weekend will have a slow rhythm, that much I know.

It’s been a hard week and we need to allow ourselves time to do not too much. Being parents of a young adult with physical and learning disabilities means that our “not too much” isn’t necessarily the same as it is for other people.

I guarantee that on Monday morning some of my work colleagues will tell each other how they rested and did nothing all weekend. They will say how much better they feel for it, fresh for the coming week. For them rest comes easy it seems. No so for us. Our daughter needs help with all aspects of her life. She needs our attention. Well, she needs it most of the time. It’s a pretty safe bet that if Austin Powers is on she won’t notice anything going on around her and we will be surplus to her requirements.

She has been out of sorts following last weekend’s stay at respite where she was unwell. She still hasn’t fully recovered. After much discussion and soul searching, we had decided to let her go despite concerns that she may be heading for a rocky episode. We know the signs so well. But we were exhausted and needed to recharge our batteries urgently. We wanted a break from being carers. We also hoped a change of scene would do her good, give her time to be with her peers and do different things. We hadn’t allowed ourselves to think of how stressful it might be for her, feeling poorly in a noisier environment than she is used to and away from familiar things.

It’s ironic that we have to recover from respite, the three of us. Respite from respite? That’s not how it’s meant to be. If we don’t use it though, we lose it. And it’s not funded for much longer in any case. But it’s so clear that our girl’s life at home with us (and with her PAs) suits her best. She’s secure and confident in her own space, and happy. 

For us, her being away last weekend was not restful. There was so much to worry about. It was hard to switch off. In the event we were called anyway, as decisions about emergency medication had to be made and that’s part of the agreement. We did manage an outing and some down time though.

I am roused from my reveries. I turn towards the kitchen door as I hear the sound of our daughter crawling out of her bed and gently calling. It’s time to get her up. “I’m coming,” I call back.