The Lodger and Us

The Lodger brought me out for lunch today, paying with his own card but my money on it.. but we'll let the illusion continue as he thought he was the bees knees. And rightly so. I think he is. As we chatted over lunch, a delicious soup, possibly the best soup he has ever had but if you live in our world you'll know that most meals for The Lodger are rated 10/10. If he knocks you points, I'd really be questioning your cooking skills.  We talked about the highlights of the summer. Staying on a dairy farm, school summer camp, horse camp, staying in the PWS holiday house, minding his grandparents house and animals, our family holiday, getting the new kittens, seeing people,  having a nice time at home..  'O and Mum, don't forget the delicious meals!'. Phew, no need to question my cooking skills.  And then we got to the 'not the highlights!' 'Well there's only one of those', he says, 'That Maze!!' On a nice day in August, I decided wouldn...

It's Saturday night. For the last few weeks The Lodger has been struggling to keep his mask on at night and we're struggling to get up every half hour to check, so he's been promoted to our bed.  The usual ritual is we put the lodger down about 8 o'clock, he asks for his mask and nose pads, we read a chapter from the horse book and off he goes to Neverland.  So it's still Saturday night. It's gone ten. We're deep in the latest boxset when there's suddenly a bang...but not on the tele. Followed by the crying. We both sprint for the stairs to be met by this: Although a little unhappier than the picture depicts. The little baby elephant crawling around dazed and confused. We shouldn't have but we did. We had a little chuckle. The elephant was fine by the way. I assume he landed on his trunk. Onwards on upwards...next stop containing the sleeping elephant.

This morning I woke up in a panic. I had one of those dreams that seemed so very realistic that I thought it was happening right at that moment. The Lodger was given an empty selection box with the task of completing a treasure hunt to fill it up with all its chocolate goods! Somewhere in the dream was the Easter Bunny without the PWS memo!!  If someone had ever told me that one day a dream featuring a selection box would cause me so much stress, I would never have believed it.  We've chosen to not give the Lodger any typical food treats. There's no biscuits/ice-cream/cake/chocolate/crisps/sweets in our house for him.  Our thinking on this is that if he never has it, he'll never miss it.  The Lodger is only two and I know there will be many food challenges for him to face as he grows older but for now all we can do is be prepared and make the healthiest choices.  As I was growing up, birthdays were always filled with Mums Chocolate Cake. Every year she m...

Sometimes its easy to forget that you do not have Prader-Willli Syndrome.   My son does but he's two. Yes I'm healthy, very healthy. In fact we rarely have bad food in the house. Frozen rubbish, processed ready meals never pass our  front door. Yet I still feel so guilty thinking about a bag of chips on the way home from a night out with the lads. Its stupid, its ridiculous.  My son wont know.  I'm not hurting him. I'm not causing him any harm. But still it always happens.  The guilt.  We often have to remind ourselves that we do not suffer from a potentially life threatening syndrome. That we are actually innocent in all of this. That we didn't cause this. Yet we punish ourselves. We subconsciously eat super healthy, we exercise regularly and we sneak a plain rice cake with a cup of tea late in the evening.  Prader willi syndrome is tough but I dont have it! Sometimes, as quite a food driven person pre PWS I forget this and forget to realise I...

99% of people greet The Lodger like he's just any other kid- smile, joke, play etc., but then there's that 1%. The 1% of people I dread to see. The pity brigade!  "O isn't his life going to be tough!" "O well that's your life over!" "Challenging times ahead for both you of." The list goes on.... The first time this happened, I smiled and  tried to say something but no words came out!  I  walked away fast! I then felt guilty and sad as I should've stood up for my son. Now I'm prepared.  I've my reply..  Yes I'm sure there'll be some challenges, like with any child but there'll also be lots of joyous celebrations! If anything he's thought me so much about life so far,. Yes it's heartbreaking. My heart will be forever broken as I know my son will face challenges the rest of us can't even imagine but in his short time already he has shown courage, bravery and determination far beyond what any adult could cope...