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WELCOME TO MY KITCHEN!!
I hope you enjoy the food!!!

Tuesday, November 23, 2010

One of Life's Little Ironies

Dear Readers recently while telling some acquaintances about my blogging habit, and other aspects of my life, I was reminded none too bluntly, about what a bitter irony my life is.

Those of you that have read my blogs, and those of you that know me personally, will know that I love food!  I love cooking food, I love eating food,  and I love talking about food.

So here I divulge my little secret ...... just over 13 years ago I gave birth to my first son.  It ended up being a very traumatic time in my life - you see the birth was not easy - he was in a frank breach position, and the end result was a child that had the doctors baffled.

I spend an agonising two weeks with him in hospital while they tried to come to some conclusions (answers please, I need answers!) - in the end they couldn't determine what was wrong with him, and we were released, but only into the hands of the Children's Hospital - the local hospital had done all it could - it was time for the specialists! They too were baffled,  they ended up sending us home, only because they had no reason to keep us, but we were still none the wiser.

I spent the next 10 months of my life (and my son's) visiting several doctors per week.  Ultimately they ended up with a diagnosis, and here is where the bitter irony comes into my life!!

My child was diagnosed with Prader Willi Syndrome.  This is a relatively unheard of, sporadically occurring, genetic condition that affects approximately one in 10,000 births (lucky me!!).  It was 1997 and doctors had not run across that many children presenting with this condition - so it took time for someone to finally see the signs and call for a test - a test that takes many weeks for the results to come through (more agony).  The horrible part of Prader Willi Syndrome (PWS) is that it is ostensibly an eating disorder - I say this quite glibly as there are also many other serious underlying conditions that present with this syndrome.  Luckily we do not have a lot of the other issues to deal with.

The sad and horrible part of PWS is that people affected with this syndrome NEVER, and I repeat NEVER feel full. The section of their brain (the hypothalamus) that registers satiety is damaged and they are ALWAYS HUNGRY!  Nearly all people that live with this condition live with all food under lock and key.....

Do you see where the irony is now???  I love food!!!!

My baking was put on hold - I could not have food lying around the house - food that was tempting and calling out to my son.  In many ways a part of me died at this time.

I have now come to terms with this, and hence through this blog I am starting to relive my love of food.  We do not live under lock and key (but we do have a section of the house where some food is locked up).  Food is a constant struggle - I cannot allow him to eat a lot of the things that I bake and give so freely to "The Darlings" (they are skinny little bean poles that need fattening up - another irony - while I try to enforce a "Diet" on one - I try to "fatten up" the other two!).  Meal times are a constant negotiation - "why can they have seconds and I can't?"  "Why can they have whatever it is???? and I can't?"

You all, as food blogger readers, know what an integral part food plays in our lives.  What would you do if you were faced with a dilemma like this?  Food is everywhere - every social event we attend has food attached to it it in some way.  I actually dread Christmas - I love to bake and cook beautiful food - but all that temptation lying around - it's just not fair!

I try to be reasonable - I try my hardest to make meals that are healthy and appealing - hence posts like Healthy Fish and Chips!

So Dear Readers perhaps you now have a little insight into some of the whys behind my meals.  Perhaps you can see why this blog is so important to me - a way of letting the inner foodie in me out.

We all struggle to some degree with the impact that food has on our lives - if you are like me and have to occasionally undertake a diet, spare a thought for those that have Prader Willi Syndrome - their life is a constant diet.  They are constantly struggling with weight issues, and for many these issues become life threatening.   I am lucky my son is not obese - but that is because we have been very vigilant with him since the age of two.

The next time you offer food to a child, think twice.  (I am like a mother eagle swooping in for the kill any time someone hands my son food - although now he is older I cannot take food from him and placate him with something else - so please do not offer him any!!), and no, please don't say "surely one can't hurt" - in the big scheme of this condition it can!

Perhaps this blog will lead me somehow to writing a book about my experiences with PWS - perhaps that is to be my goal in life?

All I can say is be thankful of your life, enjoy food as only you can enjoy it,  There are others out there for whom this is not an option.

If there are any of you out there that would like more information on PWS - please feel free to email me. I am more than happy to share my experiences of living with this syndrome.

                                My son Jack - who just turned 13 last month!

PS. I promise my next blog to be "lighter" - this was just something I needed to get off my chest.  My fellow food blogger Tammi actually planted the seed in my head recently - and so I thought why not write a blog about this!!  So thanks Tammi.

10 comments:

  1. It was great for you to open up about your son! He's beautiful and he's lucky to have a great mother like yourself!

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  2. Good blog post Cate - thanks so much for sharing! I've heard of parents not liking other people giving their child food and now I can understand why this would be the case. Sounds like you are doing a great job with Jack - he is lucky you're his mum.

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  3. Cate,I am in awe of the fanastic job you have done with Jack, he's a lovely kid. Having a child with food issues, especially when siblings are bean poles and the child not understanding why they have to be the ones monitored is hard. Jack is definitely lucky to have you!

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  4. Cate, thankyou so much for sharing that with us. It must be quite a situation for you. Jack is a gorgeous boy :)

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  5. Hi Cate,
    I’ve been following your blog since you told me about it - it’s really amazing.
    This afternoon though took my breath away.
    You are very brave.

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  6. Cate this is a great post and I am in awe with how you have coped. I can understand how difficult a situation it must be for you. Jack looks a lovely young guy. My thoughts and good wishes are with you and the family. Take care and enjoy life. Diane x

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  7. Cate

    Beautiful story, and straight from the heart. I am going to pass this along.

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  8. Hi Cate,

    I love being a part of your blogging community. It was nice to read some insight into your life and your daily battle with the love and hate relationship you have with food. It is great you are able to write about it and release some thoughts - very cathartic!

    Sounds like you are doing a great job as a Mum!

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  9. Good on you for posting, I have similiar personal reasons for relaxing into cooking and enjoying food and friends again. Your post let's me see we all have our challenges. Gorgeous boy :)

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  10. Hi Cate, I am so sorry to hear that. I've had issues with Archie because he's had numerous accidents and injuries (some life threatening with time spent in ICU at Westmead) together with severe ADHD so I know what it's like to have a child with many needs. I'm so sorry for you. You have a gorgeous boy and you are doing so well with him. I'm so glad that today you received great news from the specialist - it's a credit to how well you have coped and managed. And boys who need that bit of extra special love and attention, are special boys indeed!

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