Skip to main content

Our Christmas traditions versus PWS!

We're like the Who's in Whoville when it comes to Christmas. We love it. 

I remember when I was pregnant with The Lodger dreaming of future Christmases, that would be filled with wonder and magic... and carrying on Christmas traditions my own parents started- The advent calendar, decorating the Christmas Tree, Santa leaving a trail of chocolate money all the way around the house, the Christmas stocking at the end of the bed, the excitement I shared with my sisters on Christmas morning, the gathering of family, the annual chocolate Santa and a selection box, the Christmas morning breakfast, mince pies and chocolate kimberley biscuits in the run up to the main day, Christmas dinner with the delicious smells of spiced beef and red cabbage wafting around the house, the tower of chocolate profiteroles covered in mars bar sauce, the Christmas Day games, the Christmas dinner leftovers to be enjoyed on Stephen's Day, the gathering of friends...

The last three Christmases with The Lodger have been filled with a lot of the above. It's hard to change traditions that have been there all our lives. In a way, we needed to do them one last time before we start making Christmas less about food and more about the non-food traditions. 

In Santa's Workshop! 

The Lodger's first Christmas will be forever etched in our minds. On Christmas Eve, I woke up to him breathing rapidly and immediately knew something was not right. By Christmas Eve afternoon he was crying!! 

This was the first time he had ever cried- he was 5 months old. We rushed him to A&E, trying to remain calm as we explained PWS and the fact The Lodger had never cried before. X-rays, blood tests and the return of  the need for oxygen, the Lodger was admitted to hospital. 

We didn't have time to let Santa know, so when we woke on Christmas morning in the ward after a restless nights sleep worrying and monitoring our little baby, we were delighted to see a Christmas present at the end of The Lodgers cot. The thoughtfulness of others to those in need is appreciated more than anyone can know. 

The Lodger spent the next ten days in hospital due to breathing difficulties brought on by bronchiolitis. The Lodger's first Christmas was full of love with family visiting him throughout the ten days, the thoughtfulness of the nurses and doctors in the hospital who were also not at home with their families but who gave endlessly of their time to care for our child, the turkey sandwiches sent to us from my sisters partners parents who lived near to the hospital and the pure joy we had as we watched The Lodger get better. He didn't smile or laugh for many days. As anyone who has met The Lodger knows, this is not like him at all.

Each Christmas since The Lodger arrived, we have started to introduce a more PWS friendly approach to Christmas and it all starts from December 1st.

  • Our advent calendar has envelopes with festive messages to open each day, such as 'Put up the Christmas Tree!', 'Sing some carols' and 'Do a Christmas craft'.  We also got The Lodger (and mum & dad too) a Playmobil advent calendar were he can set up a Christmas scene. 

  • We visit Santa and at the end of the visit when everyone else has Hot Chocolate, The Lodger has his milk in a Christmas cup.  The Lodger doesn't mind not having the same as others (long may that continue!)
  • As Santa gets a treat in every other house, when he visits our house, he gets a letter from The Lodger that says 'Take 5, put your feet up and recharge before you get back in the sleigh again'! 
  • We don't have tins of roses under the tree or more food than normal at home during the festive season. We try to keep The Lodger to his usual meal time routine. The Lodger loves dining at the table with everyone, he enjoys the games and the present opening and above all else, he enjoys the company of friends and family.
  • There is always one of us keeping an eye on him. The Lodger is never left unattended, especially if there's food around. 
  • Our number one rule is - Only Mum/Dad feed The Lodger, unless he is being minded by another family member and in that case it's all written down, so The Lodger and minder know exactly what he is allowed.
When we first heard of PWS, we thought we'd have to change everything, that'd we'd have to skip lots of family get togethers, say no to seeing friends and not enjoy the Christmas outings most families take for granted but that has not been the case.  Even though food is everywhere, even more so at this time of year, it is possible to enjoy all things Christmassy! We have made adjustments but The Lodger never misses out and neither do we. As The Lodger gets older, we are prepared to make more changes to keep him happy, healthy and safe. 

If anything, The Lodger has showed us that the material things really don't matter. That first Christmas in hospital, we were delighted with the love and care The Lodger and us received from our parents, siblings, family and friends. Spending time together, playing games and watching movies... that's what Christmas is all about.

Merry Christmas to all and best wishes for 2016, from The Lodger and us!  

The Lodger & Santa at Playschool


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…