Saturday, 29 August 2015

Daily Mail Doughnuts!

Dear Daily Mail,

Thank you.

With all the serious stuff going on in the world - you know, like children dying whilst fleeing horrific persecution, the global financial crisis, the collapse of democracy, the destruction of our environment, the ransacking of society by massive multinational corporations motivated only by profit - I had almost forgotten that tomorrow I need to do my daughter's Gluten Free prescription before the end of the month.

Thank goodness for your ridiculous front page (lazily recycled from a previous story you published weeks ago) which yet again seeks to sensationalise a serious issue & make headlines out of something which is a matter of being able to live a normal life for so many.

I attach below a picture of my daughter eating some NON-prescription GF porridge. She was very happy. Having it meant she was able to join her friends for a holiday breakfast at the soft play, where, like 99% of cafes, there wouldn't be Gluten free cereal / toast / anything suitable for me to buy at that time of day for her to join in. It cost me three times what the equivalent non GF product might cost another parent but I bought it because not making my already different daughter feel 'excluded' is really important.

That happens a lot. Every party, every lunch date, every cafe you meet friends in - mum is there with a trusty bag of sandwiches, biscuits, cakes and crackers. It mustn't be news to you that my child has to eat but perhaps you haven't considered that if as a Coeliac, every time you go anywhere, you have to worry about whether there WILL be anything for you to eat and whether it will taste like cardboard, or cost an arm & leg - and if that's how you experience eating and food and going out and happy things, like parties, going to a friend's house for tea, having a sleepover, or even getting a new teacher - full of stress & anxiety - perhaps, just perhaps, you might like to change your tone?

Or should I attach another photo instead. One of the horrible anal fissure (sorry Erin!) she had at 10months old because she couldn't go to the toilet for 8 days as her digestive system had packed in and she was in terrible pain from successive constipation & diarrhoea . Or one of the photos from our holiday when she was aged 2 and so miserable on her gluten trial that she stopped eating all together because she felt so ill from the food we were forcing her to eat. If only I'd got her dad (also Coeliac) to take a picture of me crying at the time, you might have posted that, I know how you like that sort of horrid voyeurism!

What is it that you have against my child that you don't think she should have pizza as a treat on the odd Friday night after school? Or don't you think I should be able to bake her cookies or a cake to take to a party from GF flour?

Now, yes I admit, I can buy most stuff she needs in the super-market but there is more than one issue with that.

1 - Coeliac families do not magically earn 3 times as much as other families to pay their food bill.

2 - Because prescription food is made fresh, it has less additives & salt in it than supermarket food & when this is your staple food source, that's a really important factor, esp. for children.

3 - Supermarkets often run out - before we had food on prescription, we often arrived to find the last loaf of bread had gone. It meant driving around more shops with an unhappy toddler. Often it meant having no bread at all. Would you like a tantrum photo of a hungry toddler, I have lots of extra cute ones - she's a wee smasher you know!

As for the doughnuts! Really? Because I've got the prescription list right here and I've looked again & again and definitely - no doughnuts. Which is a shame, because she'd love that, I don't think she's ever had one. Just like she's never had a cone from the ice cream van or been able to have a piece of cake from a party bag or go for fast food or any of a hundred other experiences that 'normal' children in this country take for granted.

Don't feel sorry for her though because there is no way on this earth I am going to let her miss out on fun. All coeliac parents know the effort it takes to constantly have back up food in every bag, to plan every journey, to know when every kid in the class might bring in a cake to share on their birthday. To organise your life, to stay up late baking, to shop in 10 different shops to get all you need.

And yes - to FIGHT for the treatment and medication they NEED. So they are not ILL! So they are not MISERABLE! So that I can go to bed and sleep at night knowing I have done all I can to prevent my child developing bowel cancer and dying before me.

The prescription service is not perfect, we all know this but it is vital for people who would be very ill without it. My daughter is entitled to a number of units based on her nutritional needs, her dad is the same. Unsurprisingly he gets more because he is an adult male!

Our prescription tomorrow will be for bread, rolls, cereal, pasta, flour, crackers, and yes - absolutely 100% - we'll be ordering pizza bases. I might even throw in a packet of plain tea biscuits. My daughter thinks they are the business - they come with her name on the box and it makes her feel reassured, no one else will touch them.

Maybe you'd rather she had a prescription for 'real' medication like she had when she was ill and unhappy before her diagnosis. Maybe you'd rather she developed an eating disorder through unhappy associations with food? Or ended up on antidepressants perhaps? Maybe you just won't be happy until she, or her Dad, develops bowel cancer and then they'll be bleeding the NHS dry for sure.

Oh...I see, that wasn't the point of your article. It's just that nobody made out on the 1st night of Celebrity Big Brother and desperate mothers dying trying to save their children from persecution shows too much compassion for a Saturday morning front page.

And you're damn right if you detect it makes me angry, because being Coeliac is hard enough as an adult but when you are little, you have to be tough enough to go to your first school party, look all the delicious cakes in the face, watch all your new friends eating them, and still say NO, because even at 5, you know it will simply make you ill.
I'm so proud of our wee Erin, she understands how important being well is and she has the will power and common sense to do the right thing.

It's a pity your journalists haven't been quite so lucky in that respect on so many issues - but when our prescription pizzas come in, do pop by for lunch and she'll be happy to enlighten you.

 Oh - and bring the doughnuts - the gluten free kind that is - not your editors...