4:47am.....
As it has been at 2am 3am...
Awake. Tired but unable to sleep. Shattered but unable to rest. Another night with little if any sleep.
Insomnia? No. Far from it.
Worry? Yes, but not that which would keep you awake all night.
Disability.
My daughter Milla. Pulling another all nighter.
Since being born 16 weeks premature and subsequently developing severe cerebral palsy, Milla has seldom slept anywhere near a 'normal' nightly routine.
Her condition causes sporadic sleep patterns and a lack of regulation of the sleep hormone melatonin. She may sleep at 8pm...but this sleep is induced by her final feed of the day. A complete nutritional supply of formula milk delivered by a pump and tube directly into her stomach. Milla can't chew or swallow without the serious risk of aspirating into her lungs.
Asleep at 8. Sounds great. But it's sadly not. Her sleep is conducted in her home wheelchair or on our laps. Take her to bed and feed her there people suggest. We can't. Milla has gastric reflux; a condition where the stomach contents are returned up the oesophagus and results in gagging or vomiting. You can not feed her lying down.
So you sit night after night holding her while she ingests her feed and goes to sleep. Then the spasms kick in. She kicks hard, rhythmically against your shins. Her head jerks suddenly. Her back arches in a banana shape as the cerebral palsy painfully contracts muscles. Electrical messages from her brain arrive in a confused state in her muscles.
But eventually this passes and she settles.
It's now 11...11:30...12am
3 maybe 4 hours of sleep. You are yourself feeling exhausted and in need of rest. The cumulative effect of night after night of disturbed poor quality sleep taking its toll.
Transferring Milla to her bed in her room is risky. On a good night you'll manage the transfer without disturbing her. She stays asleep and you can get your head down. Until maybe 5 when she will wake..sometimes earlier. Sometimes 6...which is rare but welcome. You manage 6 hours sleep which feels like a lie in, a luxury. Forget that the ideal is 8 hours....
On other nights the movement triggers Milla to wake. And that's it. 1am 2am 3am 4am....Milla is awake.
Leave her then....she'll settle.
You can't. She cries. Leave her like with other children.....no. She bucks and kicks, spasms and contorts herself and becomes so distressed she can vomit in her bed.
Ah...the times my wife and I have had to strip sheets at 2am covered in milky vomit. Had to clean Milla up. Even bath her on occasion in the middle of the night.
Other nights the only way to settle her is to move her to our bed. She is no longer a small toddler. Milla is 10. She os getting bigger. She will kick and wriggle and to sleep 3 in the bed is impractical and uncomfortable. There isn't room. And I can't sleep while Milla's cerebral palsy results in her punching, kicking and scratching me. I have a scar on my forehead from making the mistake of falling asleep but letting go of Milla's hand. Which jerked violently in a spasm and gauged a Harry Potter type wound in my skin.
So it's off to the sofa with a sleeping bag for me while my wife stays with Milla. I need to try to sleep in order to be up at 6ish for the school routine...meaning often my wife is up all night and only gets to sleep around 5am too.
5:16 am
Milla has now gone to sleep. After a night of fighting sleep, drifting off for a minute or two then waking and just not settling, sleep has come.
But what to do. I need to get her ready for school around 6:30am. A full dose of medicines, asthma inhalers, milk feed...getting her changed...it takes time. It seems cruel to wake her. But send her to school and we can get a little rest. Leave her to sleep...or wake her. She will go to sleep in her class and catch up there. What would you do?
And what of the effect on us. 10 years of broken sleep. Disturbed nights. Exhaustion.
It's become our 'normal'. You get used to it. It doesn't get easier, but you learn to manage your life around constant sleep deprivation. You cope because you have to. You do what you have to because no one else will. You are the parents. It is your responsibility.
Work? Work was an escape. A break. Work was the rock...the solid ground I needed. The foundation for everything. A way to socialise and do something productive and useful. To feel valued and included in society.
But work became more and more difficult. I was a teacher of English. I started out when my children were born on a full time contract. I managed, I don't know how, to teach full time and care for Milla and her sister Louisa for 2 years. Then I went part time. I coped. I worked hard and maintained my professionalism in the class. I enjoyed my work, my colleagues, my school, the students.
But work began to suffer as I got more and more tired. I was heading for burnout. Exhausted, I still managed to teach. The professional head went on. But the cracks were appearing.
So redundancy in February this year was a mixed blessing. Sad to leave colleagues and a job I enjoyed and a school I had been at for 13 years. But free of that burden of responsibility to the job. Free to focus on caring for Milla and Louisa. To try to recover my energy and health.
To an extent I have done this. Yet the constant sleep issues Milla has impacts us all constantly.
Irritable, grumpy, moody, lethargic, sluggish, clumsy, forgetful....that's me. That's tiredness.
So at 5:35am I am now going to get up. If I fall asleep now I won't be up to get Louisa ready for school. 2 hours sleep tonight.
Some people party hard and rise early and go off to work bleary eyed. Burning the candle at both ends by choice.
We have no choice. The candles burns very short. No social life. Just a life of caring, coping, managing and trying to do the best we can under very difficult circumstances.
I would say good night.....but it is now morning. Another night and sleep has passed us by. A new day has begun and I for one can not sleep and miss it.
