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The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.

But then there are those other times...

It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake. 
I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome. 
The dreaded early waking. 
I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.


Ive captured this moment before, the waking and slow approach, It happens like this.
The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Then he makes his way to our room slow and steady and amazingly with no action boots, always worth celebrating the little things!

So back to this morning as we hear The Shuffle Monster approach it's time to lie perfectly still while launching into fake sleep mode. We've been here before, we know the drill.

The Lodger climbs up the middle of the bed, so far still silent. He spreads himself out making sure to have enough space,  eyes wide open staring are the ceiling and for a few seconds I convince myself he's going to go asleep.
And then it starts....

A B C D E F G...
H I J K L M N O P...you get the idea...
Followed by the rest of the alphabet in a mumbled song version. 
It's best not react, sssssshhhh, it might stop. 

It doesn't. 

We are then treated to a few choruses of The Wheels on the Bus and then Old McDonald had a cow. 
Moo Moo Mooooooooo. (and a lot more Moooing, sometimes a solid 10 minutes of Cow)
Again it's best to stay silent.

Then he turns to me and it's one of those thin line moments between 'cute son' and 'annoying son'.
He puts his nose against mine and says  'Heeeelllllooo'. I move away, obviously asleep, but he follows. I think he knows.

Luckily he gets bored and tries to see if there's any joy on Mummy's side. He climbs onto her head and whispers into her ear "I love you" followed by a very Lodger factual statement: "I am lying on your hair" just in case she wasn't aware. 

Then the next stage. The removal of the socks. I don't always hear this bit but it suddenly becomes apparent when the sock is placed over my nose in a 4 year old mild peril sort of way. The skill here is to slide the sock down from the face while staying "asleep" and avoiding smothering by small child. 

When the boredom from that fun game kicks in, he whispershouts (yes its a real word) "Dad Dad I'm going to go play
And then I fall into the trap. 
I reply "Ok" and he shouts "YOU'RE AWAKE!!!

He turns away happy to have achieved his goal, the alarm goes off, I get up and The Lodger returns to sleep for a quick snooze before breakfast, sure its still early.
And I'm sure we'll repeat proceedings tomorrow, after all The Lodger does like his routine.



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  1. Replies
    1. Thanks Elizabeth. It's a good way to keep family & friends up to date and to spread awareness!

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