Additional Needs

World Sleep Day

Posted by Emma Louise Cheetham on 11th March 2020 Additional Needs, Advice & Support, Disabilities

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Word on the grapevine is that World Sleep Day is on the 13th of this month.

To somebody who is so sleep deprived she’s borderline delirious, this sounds like absolute heaven.

My little boy appears to have no trouble sleeping - at the most inconvenient times.

For example, this kid seems to time his naps perfectly in sync with our speech and language appointments.

He may only be 16 months old but we still need these appointments to look at ways to teach my child who has a severe brain injury and is expected never to talk, how to communicate.

He is also the person that may one day help Jaxon to feel orally, although as each month passes I realise this is becoming increasingly unlikely.

I dread these appointments. They’re the ones we need Jaxon to be awake the most but he never is. It doesn’t matter if we do morning or afternoon appointments, you can almost guarantee in the waiting room he’ll drop off.

One theory is that he’s spent so much time in a hospital environment that he becomes so relaxed he can’t stay awake.

Another is that for the same reason he becomes so distressed that he almost switches off.

Once, on one of the many times we’ve unsuccessfully woken Jaxon, we conducted an appointment in the corridor near the door in the hope that the cold air would encourage Jaxon to wake.

We needed to try to progress from dummy dips with water to thickened liquids and we couldn’t do this with him when he was catching z’s.

He did wake and after a quick conversation about confidentially, I agreed I was happy to proceed in the least medical environment I’ve ever had an appointment in.

I’ve tried all sorts to wake Jaxon for these appointments, physiotherapy and stretches, tickling him, playing loud music, dancing around the room with him. You name it and I’ve probably tried it to no avail.

Come nighttime though it’s usually a very different story.

With Jaxon having so many hospital admissions due to recurrent chest infections, seizures and feeding issues in his short life, getting him into any kind of routine and sticking to it has been nigh on impossible.

It’s only within the past few weeks that I’ve been able to establish a bedtime that works. 8pm is the time I like Jaxon to be tucked up in bed and ready to sleep.

Tucked up he is, asleep he is not. I settle him down and head into the living room, baby monitor in hand with the sats monitor on for extra reassurance.

The majority of the time I’ll watch as he lies in bed, arms flailing around like he’s on the Big Dipper.

“Go to sleep Jaxon” I whisper into the monitor even though he can’t hear me.

As soon as he does drop off I can have a bit of time away from being Mummy which usually involves me doing all the adult jobs I haven’t had time to do during the days spent being Jaxon’s Mummy.

The small window between Jaxon being asleep and me going to bed gives me chance to catch up on washing, tidying, cleaning, sorting and all the other boring jobs that nobody enjoys.

I rarely get chance to just sit, relax, chill, SLEEP.

As soon as I go to bed you can pretty much guarantee that Jaxon will wake.

He doesn’t cry but I can hear over the monitor he either needs suctioning or he’s simply decided that 1am is the new 7am and it’s playtime.

His sats monitor will be beeping because he’s getting giddy and his heart rate will increase or his feeding pump will decide the witching hour is the perfect time to malfunction.

It’s a good job I’m a night owl and being awake at 3am doesn’t really phase me but the human body can only go so long without adequate rest.

Thankfully I have time to catch up on sleep when Jaxon is on sleepovers with his Daddy or Grandparents.

Usually though, when I am home alone, instead of getting an early night I spend the days running around doing things I find difficult to do when I have Jaxon with me like collecting medication, doing the shopping and other odd jobs.

Then come night time I lie in bed thinking about all the things I need to be doing round the flat in the short time I have before Jaxon comes home.

I rarely shut off for the evening and relax, just think about nothing other than mind numbing TV, chocolate and wine. I wish I could but I’m constantly on the go I find it extremely difficult.

Since Jaxon’s birth my ability to sleep and feel completely rested has disappeared.

I think that’s a Mum thing though. You never really sleep the same once you’ve had a baby. Despite most of my days being sponsored by caffeine I’m doing okay on such an excessive lack of sleep.

So I’m not sure what I’ll be doing on World Sleep Day, it’s unlikely I’ll be sleeping much though.