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Beeping Rules

It's 3am.
It's beeping again.
It might stop.
It doesn't.
How many times is this?
Only 4.
A good night so far.

I head stumbling for the Lodgers room. He's asleep, oblivious to the constant monotonous beeping. I fix the strap back on his face and the beeping stops. For now. Time for a quick snooze before the next one. So far a below average night from the average 7/8 trips across the landing and the World Record of eleven but that was in the midst of a head cold so I'll allow him that. Him and his bloody beeping mask.

But yet I am no more tired than I was before the Lodger, before his mask, before PWS. I'm trained. Self-trained, and for the most part self-taught, in the adventures of Prader Willi Syndrome.

The beeping rules are simple. Beeping mask when we're awake not my problem. Beeping mask when we're asleep, very much my area. I don't know how we got to this agreement but it works. Possibly wifey enjoys the sound of consistent beeping through the night or at best is better at ignoring it than me. More resilience maybe. But this is our life now, listening in the darkness for the beeping machine, the random calls of 'HELP' or just awake listening, wondering, how we got here.

Somehow we manage to keep a positive spin on things for the most part. I won't say its easy because it's not, but it is now our normal. Our new normal. It's life.
I said on D-Day, "These are the cards we've been dealt and anyway we cant give him back."

I don't think I really wanted to anyway but given the stress, anxiety and total unknown of that day, I explored all options. Like the way your future flashes before your eyes in movies, all my ideas, thoughts, and solutions flashed by and in the end we decided to keep the Lodger.

My wife probably intended on keeping him anyway so I said to the young registrar tasked with ruining our day, that we can't give him back so we'll just get on with it. She looked nervous. Unsure if I was joking. Or worse, serious. Or why joking in this moment wasn't in her training module for this day, this time.

It wasn't really funny I suppose but in my nervous unstructured energy that I've become so famous/infamous for I jumped to my avoidance of an awkward situation by creating humour (to me- not always to others)

She eventually left once it became clear that there was no cure. We considered keeping her there until she found the cure but again logic somehow prevailed. 

Once she was gone we started laughing. Uncontrollable laughter. Not the Lodger, he could barely move his eyes in the early days let alone laugh along at his own expense of being selected as 1 in 15000 to have PWS. Kinda like winning the anti-lottery, but not remember that you bought a ticket. No, it was just myself and my wife sitting in a room having received devastating news, laughing too much while also racked with the paranoia that someone would come in and wonder what was going on.

This was the start of the rest of our lives, living with the lodger and his very very unfunny syndrome. To this day I still have no idea why it was so funny. Because it wasn't. This syndrome would shape the rest of our lives. But what is the point of being sad about it? It's here and it's not going away.

This is about being positive and doing what needs to be done, fighting for your child, for his supports, for his rights and being happy with the life we now have. We would save the world. Become millionaires and obviously also research scientists and doctors at the same time and cure this damn syndrome. An amazing belief built solely on the realisation that I was asleep and dreaming again.

There's the damn beeping.
No. 5, still not a bad night. 


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