Skip to main content

It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn't 100% angel, he had his moments but just typical kid moments.

The Lodger, the Angel 

We finally have only two doors left to open in the advent calendar. The Lodger is excitedly awaiting the arrival of Santa Claus and at every chance for every person he meets, he wishes them a 'Merry Christmas!'.

He wanted to give a gift to every member of staff in his school but eventually agreed to gifts for the four important people in his team and a 'Merry Christmas' for everyone else. 

To The Lodger, Christmas actually isn't about food. 

This is a statement I never thought I would have written. 

Now don't get me wrong, he loves food but he knows the plan for Christmas day & Stephens Day, so to him, the meals will arrive as normal. There is nothing out of the ordinary there. 

He knows we will keep him safe in food environments. 
He knows we'll be using our full toolkit to help him throughout the day(s).
He knows how proud we are of him, we tell him every day.
He knows that we think he is kind, caring, funny and brave.

He knows that we love him the most. 

To The Lodger,  Christmas is about spending time with friends and family, giving those we love gifts and enjoying time together, watching movies, going for walks and playing games. 

Ever since the Christmas that The Lodger asked Santa for a walk, he has really shown us that we should never have worried or felt sad, that we will make the most of our Christmas celebration, our new normal. 

We wish everyone in our son's team, our families, our friends and our little heroes supporters a very happy Christmas and the very best for 2018.

Meeting Mrs Claus


  1. Good morning. This is such a beautiful post. I am a genetictics doctor at Vanderbilt and I help manage our PWS facebook page. Could I share this beautiful post with our followers? Thank you!
    - Jessica Duis

    1. Thank you for your kind message. Absolutely, please share! Happy Christmas


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…