Monday, 21 December 2015

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

Friday, 4 December 2015

What if Christmas perhaps... means a little bit more!

Today, we visited a toy shop with The Lodger. We did this to see if there is anything that he would really love Santa to bring him. We’ve been reading the toy catalogue, showing him tv ads of toys he might like but so far, we are coming up short. The Lodger has only one Christmas wish request.... and that can't be bought in a shop! 

The Lodger visiting a Christmas shop

In classic Lodger style, he has set us a Christmas challenge....

Recently, The Lodger's Auntie asked him what was Santa bringing?

The Lodger without hesitation replied 'Walk'.

'A walk?' I asked.

'Yes!' he said with the biggest smile on his face as he pointed to outside.

I explained that Santa might be so busy that day, bringing gifts to all the good boys and girls all over the world, that he might not be able to bring The Lodger for a walk.

I asked 'If Santa can't go for a walk, what else would you like?'
'Dog!' The Lodger replied with a grin.
'Santa can't bring a dog, he has no room in his sleigh. What's next?' I asked.

'Cat!' The Lodger replied.

I could now see where this would be going, a pig, a horse, a cow, a sheep and a lion soon followed. We love animals but at the moment the cuddly soft toy kind are all we need. 

Over the last few weeks, he has expanded his Christmas wish to 'A walk with Santa outside, holding his hand!' 

The Lodger has filled us with such pride, from the little baby who could only move his eyes when he was born, to the little boy he is now walking around independently. It's been incredible to see each of his milestones reached in his own time with a lot of hard work including physiotherapy and orthotics. 

Since The Lodger mastered walking just a few months ago at age 3 years 2 months, it is now one of his favourite things to do! 
Rain or shine, The Lodger loves to walk! He's getting stronger, faster and reaching greater distances. 

The Lodger spotted Santa on an episode of The Big Bang Theory before Halloween and his eyes lit up. Since then anything Christmas themed has brought great excitement. He has hugged the television when Santa appeared, cheered as he spotted Christmas trees and thanks to an app, has had many a phone call with Mr.Claus. 

The Lodger faces challenges but he does it with courage. He rarely has bad days, he rarely has tantrums and he's one of the happiest people I know. Even after a tough hospital visit, he'll high five and hug the Doctor. He's thoughtful, caring and funny! 

It really is no surprise he wants to match his two favourites together, walking and Santa.  

“Then the Grinch thought of something he hadn't before! 
What if Christmas, he thought, doesn't come from a store. 
What if Christmas...perhaps...means a little bit more!”

The Lodger meeting Santa Claus last Christmas. 

So, Santa Claus, I hope you have your walking boots ready.... we'll see you Christmas morning for a walk with The Lodger..... With a little help from some elves!