Tuesday, February 18, 2014

and then our world turned upside down...

Tuesday 11 February 2014

at 10.10am in the small doctor's room in Cobargo

our sassy boyo was diagnosed with Type 1 Diabetes

just like that

finger prick

blood glucose level 28.9

paediatrics at Canberra Hospital was notified we were on our way

 and after 3 and a half hours of tense driving,
my sassy boy and I arrived  at the emergency department

and our journey into the world of diabetes mellitus had begun

now 'diabetes' is a pretty familiar word - most folk have heard of it
some folk have a few ideas about what it means

sometimes folk know that there are 2 main types of diabetes
Type 1 and Type 2

now I don't want to bore folk with info overload

so here it is in a nutshell

Diabetes occurs when the body cannot produce enough insulin (or when the insulin that the body makes doesn't work properly). Most of the time when the word 'diabetes' is thrown around, it's Type 2 that is being described - and that's because 85-90% of folk who have the condition, have Type 2 diabetes. Only about 10% of folk diagnosed with diabetes have Type 1 diabetes (which used to be called 'juvenile diabetes' because this more savage form of the condition generally started in children under 15 years of age).

Type 1 diabetes is a life long condition

It cannot be prevented or cured

Without daily injections of insulin,
a person with Type 1 diabetes will die.

full stop.

welcome to our brave new world

After the initial shock and awe of diagnosis and admission to hospital, our steep (STEEEEEEEEP) learning curve commenced - and accelerated with alarming speed. When a young person is diagnosed with Type 1 diabetes (which in the medical world I'm learning is often abbreviated to DM1) here in Australia a whole team of folk mobilise... before we had even reached the emergency doors the troops had been assembled...  there's the paediatric endocronolgoist, the paeds registrars, paeds diabetes educators, the dieticians, the social worker... then of course once you're in the zone there are the paeds nurses, captain starlight and company to cheer up the small people, and the body-and-soul-restoring Ronald McDonald House volunteers (can't stand maccas food, but don't let me hear anyone diss the RMcD Houses.... without them I know I would have turned into a puddle of jelly)

(here's rufus bear - one of the smallest members of the diabetes team
 every child diagnosed with DM1 gets a bear that also has diabetes to keep them company)

We were lucky that our stay in hospital was brief - that's because our sassy boy was diagnosed before he developed the especially lovely condition diabetic ketoacidosis (or DKA - and no I hadn't heard of this before either...). It's unusual that a young person has Type 1 diagnosed before they develop DKA so of course waves of medicos came to quiz me about 'how did you know something was wrong?'

ahhhhhh well you see - my Farmer Phil has Type 1 diabetes... and 3 of his siblings had/have Type 1....  and one uncle, one great aunt, 2 nieces (this goes on for a bit...) had/have Type 1 diabetes

      so when our young lad seemed a bit lethargic and not quite himself

                 and started to drink a LOT of water

                                       and pee a LOT

                                                 and wake through the night (to pee a LOT more)

I thought a trip to the local GP might be in order... just to rule things out.... to have the doctor tell me 'ahhhhh the terrible teens are just a hormone or two away, this is all perfectly normal'...

       so here we are one week later

                      one week into the rest of his life

                                one week into multiple daily insulin injections and counting carbohydrates and blood glucose tests before meals, after meals, and all through the night, and weird new gadgets and a new language that includes things like 'carb exchange' and 'glucometer' and 'cartridge lancets' and 'hypoglycemia' or 'lows' and 'hyperglycemia' or 'highs' and 'ketones' and 'the honeymoon period' (no, not as romantic as it sounds) ....

 its all a bit of a head spin

and talking of turning heads....


just over two days after being released from hospital,
less than a week after dignosis and the commencement of a whole new way of being
there is our boyo back in the pool swim training like a champion

this friday he is off to represent his school
at the school zone swimming championships
yep just 10 days after diagnosis and a stretch in hospital
he's going to try to defend his title as zone age champion

even getting there will be pretty damn special don't you think?
(his stunned, yet supportive paediatric endocronologist seems to think its pretty amazing)

there may be more wet faces out of the pool than there are in it!

my hero

my boyo



  1. i wish you all courage for the journey ahead...and [though it sounds like proselytizing] suggest investigating going wheat free. i have met folk with diabetes [sorry, don't know what the numbers were 1 or 2] who seem to be managing their condition much better by rejecting that particular grain.

    and i'm so impressed by the swimming. i just puddle along with the old breast stroke...

  2. Theres already one wet face here. You don't realise how fragile life is are until you have kids.

    Best of luck (probably not quite the right words but I hope you know what I mean) for the journey ahead. At least he's got a great backup team at home to support him

  3. You are the best mother, you've got a super hero son!
    It's amazing how new difficult situations we face, soon enough become one more everyday "thing" to deal with, and we do deal wonderfully; you are both doing more than that: you are both facing it brilliantly!!!
    Best wishes and love.

    1. I feel your hugs and return some smiles - thanks for caring

  4. Excellent excellent information. I am sharing on FB. Son is amazing!

    1. I'm all for sharing if it can help another family - either diagnose or deal with diabetes.... that's the main reason I've shared our tale.... to help if we can

  5. So sorry to hear the news. There is much to be said about modern medicine and it sounds like you have many rallying around you. And oh my the young man seems to be a true fighter, can't believe he was back in the pool so quickly. Hope the championship goes well. Sending well wishes to all of you!

  6. Sitting here all choked up after reading this, ronnie. Your littleun sounds like a champ and a half! I know the rest of you are struggling with this no end, but that fella sure seems to be moving on regardless.

    Must also ditto India's thought - and even venture one step further to say gluten-free entirely - as one old friend of mine w/diabetes has done soooo much better with that diet change.

  7. Go Sass! Go Ronnie! You are both champs!
    We know a young man diagnosed with type 1 as a very small boy. He became a champion rogainer, doing 24 hr events, complete with all his equipment. His family were fabulous ambassadors for Diabetes Australia....still are.
    So I have no doubt that Sass can cope with this in conjunction with his sporting endeavours. He is a real champ.

  8. That is very hard news, especially for a wee one. But as you said, Australia serves Diabetics well - we often refer to and rely on information from Oz. (Hubby is 2.) Let us Type 3's (people living with Diabetics) worry, fuss, and perhaps nag (?) together.

  9. ronnie, i know how that enormous slap in the face feels , and how quickly one becomes familiar with ridiculously long medical terms.and i know that even tough moments can be endured and gotten thru when the focus is on love.
    roz X

  10. So sorry to hear you news Ronnie. Sending lots of positive thoughts for you and your son. All the best for Friday.

  11. SO much love and courage going forward, though it seems you and he have PLENTY of it!

  12. What a champion he is Ronnie. The hardest thing about being a mother is not being able to make everything right for your child. My thoughts are with you.

  13. I'm choked up, tearful, and filled with compassion for the hard work ahead for all of you as you begin this new way of life. Love and hugs from someone who follows but has never commented before.

    1. how kind of you to take the time now to drop a note *waves* I have been so stunned by the kindness of strangers (RmcD house volunteers) and social media friends (the outpouring of offers from friends on facebook was overwhelming)



  14. What a journey you are all now on. Thank heavens for medical research as now there is so much known. Your boy is such a hero, and obviously on top of it all. Good luck with the swim.

  15. With that family connection it was just as well you caught it early. A long road but sounds as if you have a bright sassy boy who will deal with it all, and having lived with a family connection should help. I have type 2, brought on by a virus that targetted my pancreas, of all things.
    Thinking of you.

  16. I imagine you still must be in shock and reeling… been thinking about you and your remarkable boy, who sounds truly exceptional in all the best ways.

  17. such hard news, ronnie. love and huge courage to you all as you make the adjustment. and to your son, well, he rocks.


thanks for all your lovely comments - your words are greatly appreciated xx