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Look how far YOU have come!

Sometimes we are all a little bit too Irish.
We just can't take a compliment. We look at our feet, shuffle uncomfortably hoping that the nice person would just go away and leave us to our lives. It's so Irish.
Recently the Lodger visited a neighbour with his grandmother (the Dodo - old extinct bird, her joke, not mine) and he had a great time. 

Later that evening my wife received a text from that neighbour saying how she had the pleasure of entertaining the Lodger and that he was a breath of fresh air. So far nothing new to me, the Lodger is pretty amazing. The next bit is the bit that caught my attention:
'While I appreciate there are many difficult times he really is a credit to his Mum and Dad.'
Firstly I read it and thought that's nice but I'm Irish so I don't really know how to take compliments but when I thought about it I realised that the Lodger is great because of us. 
And sometimes it's nice to just sit and reflect on that. We're not doing a bad …
Recent posts

Planting the Thought Seed!

A few years ago we went to a Living Better with PWS workshop. I still take out my covered in scribbled notes guide from the workshop as it is full of hints, advice and information from other parents of kids with PWS. Our mentors!

There is nobody who understands PWS better than other parents. Granted, their child might have different symptoms or the same symptoms with varying degrees of severity, different strategies for dealing with the array of challenges but from each parent I have met, I have gained knowledge. (Thank you!)

As the Lodger has gotten older and new challenges arrive, the guide has proven invaluable.

My old reliable car has proven not so reliable and has reached the end of it's days. Not bad for '98 vehicle. This, for The Lodger, could have been traumatic, except for the fact I had planted the seed a few months ago.

We were driving home one day and we got on to the subject of old things and how sometimes we need to replace them. I happened to use my car as an exampl…

Easter Eve

It’s the night before Easter and all through the house, not a creature is stirring....
Oops wrong event! 
It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy.
'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. Does the Easter bunny know?' 'Mum…

Sick but hungry, hungry, hungry

It is one of the most heartbreaking things to see your child struggling.  The Lodger is sick.... again.  Since starting school, he seems to be catching every bug going.
Last October in the midst of Storm Ophelia, The Lodger vomited for the first time. For those not in the know, people with PWS rarely vomit. It can be a sign of serious illness. He showed no sign of illness beforehand. In fact, we were out for a walk when it happened. His version of the story is very to the point...
"We were walking and then I stopped, my mouth opened and the sick came out!" Straight afterwards, he asked for his snack but a frantic call to his PWS nurse, as I sought to find out how I'd know if his stomach was rupturing, emphasised the point to him that he'd have to wait a little while for his snack. 
The Lodger has 100% respect for what his PWS Nurses and Doctors say.
And as an aside, I didn't tell The Lodger that I thought his stomach was rupturing. I remained somewhat calm but internall…

Ugh Pancake Tuesday!

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things. 
Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way. 
He then stopped and said “What is Pancake Tuesday?”
A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger. 
"Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is Pancake Tuesday?" "M…

Speaking as gaeilge!

"Gabh mo leithscéal...
Gabh mo leithscéal.... Gabh mo leithscéal....."
I drove along perplexed.  99.9% of the time I understand The Lodger but there's always that 0.1% that will leave me completely at a loss. I'll ask him questions to see if I can figure it out and most of the time it works but not this time. 
Due to PWS, The Lodger's speech is delayed. He can say all the words in the world now but he misses the last syllable of most words and some sounds are still difficult for him but he's working on it. This means that to the untrained and unfocused ear, some words sound alike.
Just the other day he announced at breakfast "Mum, I'll help you" and I said, "Fantastic, superstar!". His father and Auntie looked on aghast until they realised he said help, not hate!
And just like everything in the world of The Lodger, practise and patience will get him there.
However this particular time, on the drive in to town, I was at a loss!
"Sorry l…

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 …