I don't have Prader-Willi Syndrome

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 can cook good food. And I enjoy it. I can enjoy good restaurants. I can read cookery books without the guilt and plan my vegetable garden without feeling I am hurting my son.

My son has Prader Willi Syndrome and hes learning to deal with it. We all are. I look to support my son through his tough times but it's also important for me to remember to live my life, enjoy my food and not let Prader Willi Syndrome win.

I am hungry for a cure but also I'm just hungry, and thats ok.

Comments

To lock or not to lock, that is not the question anymore.

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome. To save you doing the maths: twelve years and almost 2 months ago. We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day…. We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios. We talk with many PWS families- both with children older and younger than our boy, The Lodger. I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’ Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

Turn around and go home.

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to. The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed. We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one. However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned. The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

Water, milk….

This week we were driving along and Younger bro started listing food. “Apple, raisins , rice cakes” “Ugh” said The Lodger “Mummm make him stop. He’s making me think of food and it’s not time for food!” So, I had to ask my four year old son to not mention food to his big brother who has PWS, even if it’s food that’s ok for his special tummy. I explained we didn’t want to make The Lodger sad. That sometimes food chat can making The Lodger emotional. Then The Lodger adds in ‘unless I talk to him about food first, then we can talk about it’. ‘Is this because of the Prader Willi?’ said Younger Bro “Yes!” said The Lodger. Being a sibling to someone with PWS is complex. There is always something new to navigate but at four years old he understands more than most people. “Water, Milk..” said Younger bro. “Mummmmm they’re things I drink with food. Tell him the rules again!” said an exasperated Lodger. Younger bro is sharp. I could see his cheeky knowing glanc...

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