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?
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…
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?"