Saturday, 31 January 2015

The Selection Box

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 made a cake into a bus, a train, a bear, a horse, a computer.. the list went on. My cousins always challenged her with intricate designs and she was always up to the challenge. Before The Lodger arrived I loved making cupcakes. I day dreamed of my child's birthday party that would be filled with delicious cupcakes decorated into anything imaginable - from space themed, to animal and popcorn cupcakes. A tradition similar to what we grew up with. 

With a little adjustment and a different view on 'birthday cake' for The Lodgers 2nd birthday last July, I took to watermelon carving and fruit wands! Sometimes I think Prader-Willi will get the better of me, that it will crush my dreams for my child. We're two years in and we are on a different path to what we expected to be on but we're doing ok. Actually, we're doing better than ok, we are overcoming challenges and looking at the world in a completely different way.... and it's not bad! 




Friday, 9 January 2015

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.