Additional Needs

S is for Sleep

Posted by Sam Bowen on 2nd September 2016 Additional Needs, Disabilities

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That was back in the day when Lucy was a baby and her sleep patterns (as scattered as a crochet one) allowed me to at least cat nap.

I never, ever had what other mums lovingly referred to as the, “golden two hours”, in the afternoon when their cherubs slept. I hated them for even mentioning it.

A whole two hours? In one go? At the same time every day? Don’t be stupid!

If it wasn’t the regular night time feeds waking me up, it was the colic (that was a trying time).

Next came the whole day/night confusion thing.

Then the sensory deprivation phase followed swiftly but thankfully briefly by the separation anxiety - a few weeks of realising that the mummy she’d left downstairs was not the hissing mess that came to see her in her room, knocked that one on the head.

We tried everything, from the Gina Ford (I’d punch that woman if I ever met her) method to, “soothing”, lullaby lights and sounds which did anything but what they promised.

Once she was finally off to the land of nod, we’d have to perch on the sofa downstairs.

We kept the TV on low and would creep about at bed time because even though she could sleep through a storm, a mouse fart or that squeaky top stair woke her instantly.

Then an argument in raised whispers would ensue whilst my husband and I blamed each other for waking her.

The toddler years were marginally better until when she was two and a half, an evil being crept into our house and invaded Lucy...

Epilepsy. Nocturnal epilepsy.

That first night was the start of a new threat.

Even though she grew into sleeping better, it ruined any hope of it for us from that point on.

Sleep became a shadow of its former self. Some part of us never allowed ourselves to be fully taken into its arms and rested.

Every sound made us jump, every whimper or whine shot us out of bed to check that she was alright and not having a seizure, or choking, or not breathing.

Every time we had to call an ambulance in the night and go to hospital, blue lights flashing, we left sleep at home, sometimes for days on end.

Any sleep we did get at last was filled with vivid dreams and more than a few times I actually awoke having a panic attack.

Thankfully, an amazing family whose own son has severe epilepsy, developed a wearable epilepsy alarm which senses the raised heartbeat that happens just before a seizure.

The Pulseguard by Adris Technologies, has given back our permission to sleep, even if madam still has times when she doesn’t give it and stays awake all night.

We can trust that the Pulseguard is watching over our daughter for us.

These days I go by the Army motto, “Eat when you can, sleep when you can,” which as the latter is still irregular has just resulted in me becoming a bit more beach ball than beach babe!