"Mummy I don't want to be broken"

For the first time today my little 3 year old begged me to remove her “diabetes”.  She asked that her pancreas not be broken – over and over again.

In so many ways she is so much older than her 3 years.  We can have conversations about what it means to be high or low.  She understands what her blood glucose levels should be and can read them on her monitor.  She is starting to test herself and discuss the carbohydrate content of the foods she eats.  We also discuss fats, sugar and protein.  We talk about exercise and why it is important and also how it will impact her blood glucose levels.  Before today my daughter had always soldered on.  Very occasionally she would cry at a needle, but almost always she would take her 5 plus needles each day and 2 – 3 hourly blood tests in her stride.

She was a little high this afternoon and I was tired and in a cranky mood too – so maybe that instigated her self analysis.  “Why do I have diabetes?  Did you have diabetes when to were 3?  Why do some people have type 2 diabetes?  Why can they get better and I can’t?” She hit me with question after question.  Most I couldn’t answer with anything better than, I just don’t know.  When she asked me if one day her pancreas would get better it just broke my heart. In all honestly, I just don’t have enough faith in a cure.  Not enough money is spent on type 1 diabetes.  Not enough people understand what it means to have type 1 diabetes. Kids and adults with type 1 have an invisible disease to a large degree.  Most of the time no-one knows they have type 1 diabetes.

My daily fears are that my daughter won’t wake when sleeping due to a heart failure from a low, the constant monitoring of food, blood testing and needles and the common questions about why she has diabetes (“Did you feed her lots of lollies when she was a baby?” or my favourite “Don’t you wish you breast fed her?”).  As time goes on I am getting better with the questions.  At least people are interested enough to ask and this gives me a chance to explain type 1 to one more person – and maybe that one person will share with someone else.

If I believed in God I would pray for a cure, but all I can do is ask those who have a spare few dollars to donate to the Juvenile Diabetes Research Foundation.  If not today, next week, next month, next year or even 10 years from now.  I would love for there to be a cure one day.  In the meantime, small technological advances make life easier for those with type 1.  And technology is something I do offer my daughter for hope – that and my 100% support.  There are promising medical devices overseas that hopefully will reach Australia and be funded by our government.

We take it one day at a time – but today was a tough day emotionally for all of us.

Jackie Goldston is the editor of a regional Queensland kids magazine and business strategy consultant, former marketing manager for big pharma and fantastic charities.  You can read her blog http://mumbuzz.blogspot.com.au or check out www.kidsonthecoast.com.au