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Blueberries versus Mandarins

I knew it was coming. I was prepared for the ocean of calmness we were in to come crashing down with the giant wave of a PWS moment. 


Did I expect it that Monday? Not one bit. In all honesty, I’m not sure I ever expect it and my heart skips a beat when I get ‘the call’.
Flight or fight mode kicks in. For me, it’s flight mode. I’ll take The Lodger home, wait until the PWS moment has passed, and we’ll talk things through quietly and calmly. Just once. We don’t dwell on it. A consequence is put in place and we move on. 
We’re not used to meltdowns at home. So when they happen out in the world, I feel completely out of my depth. 
I’m unpractised at this. I feel like a rookie. I try to remember everything I’ve read on how to handle a meltdown. Keep a calm voice tone, use positive language, don’t use too many words, don’t interrogate at the moment and keep breathing. 
All easier said than done. 
I read a book a while ago and I’ve reread it several times since.  It’s called‘ Not what I expected by …
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Christmas time, mistletoe and breakfast!

I'm about to write a sentence that I never thought I'd write without feeling a pang of sadness. The Lodger is extremely excited for Christmas (that's not the sentence, I'll let you know when I write it.) He, as usual, has it all planned out in his mind with the backup plan of "I know things can change.'

The plan has a lot of detail but it's this line that makes me, of all things, smile.
'Mum, after we see what Santa has left. Oooo lego for me, hopefully. I'll go to the kitchen with Dad and help him make Christmas breakfast'
There's the line. 
Help him make Christmas breakfast.
The Lodger is equally as excited for Santa as he is for Christmas breakfast. 
Now, don't get me wrong, all breakfasts and meals are exciting in this house but when I've been talking to the Lodger about Christmas, his excitement for helping Dad make Christmas breakfast is joyful.


I never thought I'd say that. This is The Lodgers seventh Christmas.   I often think b…

Hopefully

Hopefully is our word of the moment.
Every time we plan something, I follow it up with 'but plans can change, hopefully, it will be plan A but sometimes we have to move to a different plan'. 
It's become so ingrained in our everyday life now that I don't really even take notice. 

The Lodger for his first five years had a very convenient bus/train network at our old house. Granted, things could run late but they were plentiful and always had space for everyone.

Last weekend, the Sunday plan was to get the Galway bus into Galway city to meet Dad after work. 

Hopefully, the bus will come. 
Hopefully, there'll be space for us on the bus.
Mum and Dad have a plan B, incase. 
Hopefully, the bus will come. 
Mum, why are we saying hopefully?
Ok Mum, hopefully. 

As I stood with The Lodger, at the spot where I thought the bus would stop but couldn't fully confirm it with The Lodger who expected a bus stop sign, I had an inkling of what it was like to live as The Lodger does. 

I had o…

Forest Animals

The Lodger loves walking. Which for a person with PWS is great. Accidental exercise as I like to call it. Walking in our house is often a treat. When the Lodger has a good day in school his treat is a walk to see the cows. If the day isn't so good we walk a different way punishing him with hedgerows and trees. That'll teach him.

We use incentives a lot with the Lodger to reward his good behaviour and keep him focused on little goals day by day. Luckily the excitement of a visit to see the cows keeps him on the straight and narrow most school days. The only problem now is there are plenty of cows in the fields around the house so he doesn't have to go far to watch his favourite animals.


The Lodger loves walking to school, walking to see the cows, and also walking in the forest opposite our house. The Galway forest as he calls. In his world literally the only forest in Galway. One of only two in Ireland. The other one is in Kildare if you're wondering. We often go on jaunt…

Surviving Halloween

The Lodger has learned the days of the week. 
Brilliant. 
Did you read that with an underlying sarcastic tone?  Honestly, it is fantastic that The Lodger has learned the days of the week, it's another milestone in the never-ending list of things society deems goals to achieve. However, because of this new skill, we can't be as direct with future plans. An answer with the day of the week before meant nothing but now it's a different story. 
I accidentally answered his question of when Halloween is on with the day of the week. I'll blame it on being slighted distracted. 
So, in the run-up to Wednesday, The Lodger did his new skill of saying what day it is and following it with the future days. This just sounds like an excited kid. Correct but also wrong because when you mix PWS in, you get excitement and anxiety. 
The plan was put in place. Incase you think we sit up at night, with paper and pens and whatever else you need to make a plan, we don't. It becomes a covert plan t…

The Last Last Day

Just the other day myself, The Lodger and his Auntie were having lunch when he threw out a question that had his Auntie nearly spraying her cup of tea around the room.

"Is Papa going to die tomorrow?" The Lodger innocently asked. 

"What, of course not, why do you think that?" I replied.

"Well, Papa said he'd be an old man tomorrow and it's his last day!"

FYI Papa is retiring.

It reminded me of the show Dinosaurs, were on Hurling Day the son-in-law hurled his mother in law off the cliff and the grandson really didn't like the idea of it! I've a feeling it's a show The Lodger would enjoy! 



I reassured The Lodger, explaining retirement and all was well... or so I thought. 

Later that day, we were travelling across the country homeward bound and I got the grilling, I should've known to expect. 

"Mum,  you said that Mother (his great-grandmother) died because she was old"

Me: "Yes I did say that but I should have said extremely ol…

If CPAP was Ironman, The Lodger would be the winner!

If CPAP was Ironman, The Lodger would be the winner!

That's the quote of the day. I think we better get it printed on a t-shirt.  The Lodger, Champion of CPAP 2018
For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger "Well done Dad!"


We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too.
Obviously, being a champion of CPAP (For those without knowledge of CPAP clickhere ) is now close to the top of the list, possibly even knocking down the Ironman medal from first place. The Lodger had his review with hi…