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, the Easter Bunny is happy to bring me special things. Mum, isn't he??'
I often think back to receiving The Lodgers diagnosis and although we have adapted every occasion to suit him and make sure he’s included, Easter is one of the hardest to deal with.
It is essentially an event about chocolate.
The Lodger is very aware of how he eats different things and so far, as long as he has something that’s ok for his special tummy, it’s all good!
Today he handed back an Easter egg to a very thoughtful lady who handed him one but didn’t know the Lodger well enough to know the rules.
‘I don’t eat chocolate!’
His Auntie, who witnessed the moment said he looked a little bit cross, in a how dare you give me chocolate, what are you thinking, sort of way!
I’m not sure I know any person who would refuse an Easter egg
The lady actually got away quite lightly. Just this morning, in his imaginary game, he was calling the police to put people in jail who gave him chocolate.
'Mum, I'm not happy one bit. Phone the police and put them in jail! You can't give me chocolate!'
As incredible as he is right now, at almost 6 years old, I do worry about his future older being.
Will he have the same restraint? Will he be happy with handing back or refusing food? Will he be content with the rules when he's 10, 16, 21, 30.......70???
Will he just get on with it and be happy with his carefully controlled diet?
Will non-food things suffice at Easter???
Maybe, just maybe, in a lab somewhere, someone will crack the code and hyperphagia will be treatable but until then, we will continue to adapt and make everything as PWS friendly as we possibly can!
Anyway, this year we used Easter to our advantage.
About two months ago, The Lodger got new Action Boots (SMOs, shorter leg orthotics support to just above the anklebone) and unlike his old ones, these took a bit of extra time to get used to.
We decided that the Easter Bunny would definitely be a great motivator.
The Lodger has been ticking off his chart, increasing his minutes wearing them and he's now in them full time!
And so Easter Eve has arrived and he’s giddy and excited and just can’t wait to wake up in the morning and tell me it’s Easter Day!
The Lodger left along with his chart, an apple and a drink of orange juice out for the Bunny! I don’t know where he got the idea of orange juice but orange juice he decided, so orange juice it is. Thankfully, his Auntie had some in the fridge. The perks of our current living situation, otherwise I'd have been liquidizing mandarins!
And as we said goodnight, and I reassured him that the Easter Bunny knows where he is, knows he's been great with his new legs, knows about his special tummy, The Lodger could just not hold in the excitement. He squeezed me tight and delightedly told me....
'Mum, I'm so excited for you. You might get a chocolate egg tomorrow!!!''
That's The Lodger, always thoughtful, always thinking of others and so delighted and excited for other people, that in some strange way, even though he'll get no food (his favourite thing) from the Easter Bunny, he's happy for me that I might.