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

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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


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  1. afterthought23 December 2017 at 06:04

    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

    ReplyDelete
    Replies
    1. Emma23 December 2017 at 07:17

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

      Delete

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