Skip to main content

I knew the question was coming!

I knew the question was coming. I could see it forming on the lips of the parent sitting across from me. She's holding her little girl of about one. I can sense it. She's about to ask 'What age is your little boy?'

There's a split second here where I hesitate. I can lie and say he's one. He's about the size of a one year old. He's sitting like a one year old. Crawling like a one year old. This will avoid the follow up look of surprise, the look of pity, the comments 'o he's small for his age' and the potential questions of why!

I sit and make up my mind. I tell her he's 26 months. I can quickly see her analyse him. She's probably not even aware she does it. I immediately follow it up with 'and your little girl?'

I keep the conversation going with the usual topics of parenthood - sleeping, outgrowing clothes, tiredness etc etc.,

Luckily the class starts before I'm quizzed further.

I don't hold back on spreading awareness. I'll tell anybody who wants to listen all about Prader-Willi Syndrome but sometimes, I just would like for him to just be himself- no labels attached.

He's just that lovely little kid, who always shares, loves to dance and sing, loves music, has a beautiful smile, an infectious laugh. I'd love for The Lodger in his music class to just be himself- not PWS.

I feel guilty for having the thought. I just sometimes like to be PWS free.
A day where I don't have to explain PWS and complexities of symptoms associated with it.

Just before his second birthday, we were at the garden centre andThe Lodger was happily sitting in the trolley, waving at everyone. He's very engaging- everyone always stops to give him attention. He made friends with a woman as we waited in the cash register line. They started playing peek-a-boo and I knew the inevitable question was coming- 'What age is he?' 

'He's one' I replied. (not a lie 23 months is still age one)
'Isn't he just lovely' she replied, 'He's the sweetest child'.

I smiled and thanked her and as we walked away- he was smiling and waving- with a queue of people waving back.

It was a lovely moment. No PWS, just The Lodger. 


Popular posts from this blog

The Chocolate Holiday

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'. 

He's also very aware that there are food types he can't eat. 

We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate feedback…

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&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 

The 1st December could not come fast enough. 
"How many days are le…