Skip to main content


My phone beeped early this morning. I picked it up and smiled. There on the screen was a reminder that today was the 1st anniversary of the day The Lodger hugged back. 

Since that day, I must have received a hug every waking hour. The Lodger wakes and hugs you, he hugs with all his strength, he hugs when he's really happy, when he's sad, before he goes to bed, to say goodbye,  he hugs you and means it. 

The Lodger has severely low muscle tone and as a result, his milestones are delayed. Physiotherapy plays big role in his daily activity. He's almost two and a half years old and unfortunately he hasn't started growth hormone therapy yet, so every milestone reached is through his own determination. 

The Lodger has been hugged everyday since day one. I often think how unbeknownst to us, while we were focusing on crawling and teaching him jigsaws, somewhere inside him, he was working towards hugging Mum and Dad back. 

His latest skill is cruising the furniture. One day, he just went for it. It takes every bit of strength and concentration that he has. It amazes me. The Lodger is an expert at crawling, he's fast and agile. He can get everywhere he wants to. Yet, he decided to start cruising. It's snail paced, it's challenging and it takes all his muscle strength but he's doing it and is so proud of himself! 

We attended a conference, just before The Lodger turned one were an expert said that people with Prader-Willi Syndrome hug a lot but don't mean it. At the time, I had no concrete evidence to agree or disagree, as he was only very young at the time but now, I do. 

The Lodger hugs and he means it.   Today we celebrate the 1st Hug-iversary! 

Happy Hug-iversary! x


Post a Comment

Popular posts from this blog

The Lodger on tour!

The Lodger recently had his first school tour. The week leading up to the much-anticpated school tour started with an unexplained bout of challenging behaviour. 
The Lodger went back to school after his midterm break on Monday. He didn’t have the best day, a bit tired, a little bit oppositional, but we put it down to back to school feelings (and I kept my fingers crossed that he wasn't getting sick!)
Tuesday continued in the same breath! I was perplexed as he was fine at home, his usual happy Lodger self! I had a chat with his teacher and SNA after school and no light was shared but we decided maybe it was school tour excitement?? 
That was until, Tuesday evening and myself and the lodger were  having a little chat about things using my “I’m not trying to find out anything but really I am” strategy.... and for some unknown reason, he had gotten it into his head that he wouldn’t be having snack or lunch on his school tour.
Alarm bells rang, Take a breath! You think you have all bases c…

This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …

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…