We are told our daughter has been sleeping twelve hours a night in her new home. This doesn’t seem right or fair. For over twenty years, we’ve had interrupted nights with her, sleepless nights, trying to go to sleep nights, getting back into bed nights. Endless nights followed by long, long, foggy days.

The early years were the worst. I can still see the armchair I used to tuck myself into in the corner of her room on those long lonely nights back then, holding her in my arms, singing quietly to her, telling stories, gently rocking her, then holding her tight in the silence, willing her to sleep against all odds. If and when she did finally succumb it would be with trepidation that I slid her into her bed and crept away to catch a few winks myself. A breath on her cheek, a soft whisper, a chink of light from a door ajar could wake her. We took turns every night, my partner and I. Relentlessly.

We were told on diagnosis that our daughter’s condition would present challenges and she would always need full time care. I don’t remember sleep problems being mentioned then but I guess we were in shock. As we grew tireder and more desperate for solutions in our haze and craziness, a locum consultant helpfully suggested we give our daughter warm baths with essential oils in the middle of the night. Really?

Dealing with so many nights without sleep and the discombobulation of the days following them has taken some considerable doing over the years. Being tired is exhausting. Being told “I don’t know how you do it,” is wearing. So is listening to younger colleagues or friends complaining that they’ve only had 6 hours sleep. I still find it irritating when people yawn loudly in my face.

We are missing our girl immensely. We talk about her in the stillness of the night, wondering, worrying, going over everything interminably. We need to let go more, enjoy our new time together, make plans, have a project. Our nights are once again interrupted, protracted, or annoyingly cut short by wakefulness. The fault is ours entirely. Sleep is a habit we must relearn.

Last week she was under the weather and wanted to stay in bed even after a long sleep through the night. The sounds of the TV and a running bath were unusually not enough to entice her out of her pit and she refused to get up. Surely she didn’t want yet more sleep? Unheard of. The doctor thought she might have a bug:  time of year.  Her key worker thought she seemed sad: such a lot to take in in such a short time. Who’s to say? What would she say if she could speak? We remind ourselves of how exhausting change is. For us it’s a steep hill. For her it is mountain high.

She’s home for the weekend and we have plans. The first night she sleeps through, almost twelve hours. We enjoy a busy day. The next night is like old times, up and down, up and down. It is followed by a very, very slow morning indeed.

Take a look at the previous Life in our bubble blog post.

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