No OFF switch but a MUTE button

2019! Yay! It feels like a fresh start after a crazy year. Life is good and life is different!

My eldest two boys have finished high school. The eldest is about to leave for university after a gap year and the second is starting his gap year before heading to uni in a year’s time. Our third boy is in the middle years of his high school education.

Getting two boys through high school was full on and the intensity of the experience was increased as the second boy has type 1 diabetes.

So much is happening in those last couple of years of school. Growing up physically and emotionally, sport, part time work, relationships, social life and just occasionally the odd bit of study. Hard enough on its own but then you add an invisible chronic condition to the mix and we have lift off!

We have weathered a few storms, but found the strength and love to move on. These are not my stories to tell and our relationship is great so for that I am truly thankful.

How has this been possible?

I remember when my son was first diagnosed with type 1 Diabetes, I made the conscious decision to deal with one life event at a time but lurking in the back of my head was a list of things that I wanted my boy to be able to do and he did do them all:

  • Leave the house without me – he did that the day after he came home from the hospital.
  • Go to school (read about that here)
  • Go on our usual off grid camping trips (read about that here)
  • Go on a school excursion
  • Go on a sleepover
  • Go on school camp
  • Learn to be a mean carb counter like his mammy (read about that here)
  • Be able to let his parents have a big night out (that sort of happened here)
  • Play competitive sport away from home without a parent there (read about that here)
  • Get a part time job – very unglamorous jobs in fast food outlets
  • Have a girlfriend ( read about that here )
  • Learn to drive (read about that here)
  • Pass driving test – did this first time! Much aggro in the house as big brother did not!
  • Grow a pair of Diabetes Balls (read about that here)
  • Understand that we have his back no matter what ( read about that here)
  • Grow into a fine young man (read about that here)
  • Go to Schoolies and survive (read about that here and here)
  • Get a place at University- good for him! Despite a shitty Yr 12, he did it!

Wow! What a list! It’s a long time since I’ve read through this blog and I feel so proud of my boy when I look back over the last five years. I often think back to the post I wrote many years ago about The Boy and the Egg. Read about it here. It’s a post which has connected me to people all over the world and for that I am most grateful.

So, what now? Is my job done? I do not have an OFF switch, there is no invisible button that I pass to my son and now let him ‘do diabetes solo’. I am here for the long run.

During this lovely, long, hot Australian summer, there have been some things to learn about navigating the health care system and these are life skills which he will need to know:

  • How to get a Medicare card
  • How to get a low income health care card and the repeated visits needed as more info is gradually required as online forms have not been updated. Still not got this one in our hands yet.
    The patience and resilience not to give up trying to get what your are entitled to despite the overwhelming bureaucracy
    Going to the chemist and putting in a prescription

He has taken all this in his stride and now possesses a wallet full of the various cards (well almost! We are still waiting for the card mentioned above) which will give him access to the people and medication to which he is entitled.

Is my job over? I think not. His dad and I have been by his side in the five years since his diagnosis; sometimes literally, at others, by giving him the confidence and hopefully the resilience to go out into the world. Have we done an amazing job? Absolutely not! We have made mistakes, we have learnt from them, we have made them again and we have moved forward together, albeit with us, as parents, retreating into the background more and more but we are still there.

Changing to a new medical team towards the end of last year has been wonderful. My boy can go to the appointments on his own but we are welcome too, for as long as he want us there. When we go for appointments, it’s lovely to see various combinations of people waiting. Some are on their own, others have family or even friends with them as support. Sometimes these other people go in to the appointments, sometimes they wait outside.

My son recently went to see his Diabetes Educator on his own and it felt right for him to do that. He was happy to go alone and I felt calm about it too. Next time one of us may go with him, if he wants, as his insulin is being adjusted and an extra set of ears really helps when there is so much info to take in.

What is my role in these appointments? I’m a set of ears and have discovered my internal mute button. My role isn’t to talk. Remembering the changes to be made and making notes in my Gen X actual paper notebook is all I need to do. It’s quite liberating!

I’ve discovered that I can use this mute button on other people too. As a parent of a child with a chronic health condition, we lay ourselves and our families bare to those who are charged with helping us. We live in a society where people feel entitled to judge what you do and these judgements can be harsh. I now use that mute button on those who cannot see past the numbers to the person who lies behind them. I use it on people who make stupid, misinformed comments about my boy or how we choose to live our lives. I point an invisible remote control at them and hit mute. They may continue to move their mouths but I hear nothing. It’s great!

Where do I go from here? I feel so positive! I’ve got my tribe! I follow and have sought advice and wise counsel from the elders of the #doc, especially #ozdoc. I have made beautiful friendships online with a few amazing people, including several mums and we message each other, chatting, swapping life stories both funny and sad and giving support where needed. I’ve got a real life flesh and blood d-friend too. Her son has diabetes and more importantly we have a great friendship and so much more in common than a child with diabetes. It does mean though that we trust each other and can talk through situations. How lucky am I?

My boy has the world at his feet, a gap year before him, another year to live at home and learn important life skills with ‘in house’ support to back him up and in a year he may fly the nest. That big event has still not made it onto my mental list!

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Freedom! Move over William Wallace!

So here we have it! Schoolies is finally here. For the uninitiated, schoolies is a very Aussie tradition during which school leavers hit party mode hard for a week. Some head to Bali or Fiji, others stay closer to home, opting for places like Byron Bay or the Gold Coast.

My boys think it’s the best thing ever. Living in rural Australia, they have never lived the city life so are happy to stay on these shores. Big brother went last year and survived. This year came the turn of my middle boy who has Type 1 diabetes. Last year I worried about drugs, alcohol, and coward punches.

This year, to my worry list (which I try to contain to a padded cell in my head, visiting only occasionally to indulge in a huge silent scream), I have added 7 nights managing type 1 diabetes alone. Did I even think about stopping my son from going? Not ever, not even for a second.

He has survived 6 years of high school, has submitted hundreds of assessment tasks, sat countless exams and navigated relationships with teachers and peers. For five of those years his constant companion has been Type 1 diabetes. He so deserves to celebrate and the style in which he does that is his choice and is totally funded by him, from the sweat of his brow, after working solidly over the last couple of years in a fast food restaurant.

I read about people living ‘their best life’. It’s a daft expression as, for most of us, our choices are pretty limited. For my boy, he is totally living the life he wants and that’s what it’s all about.

I dreamt of having children who played musical instruments, were fluent in foreign languages and who loved sitting around watch ABC docos and chatting about the novels they were currently reading. Instead, I wasted thousands of dollars on piano lessons, never got past nursery rhymes in French and Italian, and have boys who do not share my passion for reading. They are however very aware of how lucky we are to live where we do and are grateful to enjoy the freedoms of the society in which we live. They will all be good men. Of this I am sure.

I have gradually realigned my lofty cultural expectations and have grown to accept the weird and wonderful ways of my three boys. The toilet seat at their end of the house is usually up and the first thing I do when unexpected visitors arrive is quickly go and clean it. I know that wrestling me is their version of a hug. I have learnt many life hacks on quick clean ups and coverups!

So here we are now, almost at the end of schoolies. We exchange daily texts, have only spoken once, and Diabetes rarely rates a mention. He is happy and knows what he needs to do. He is wearing a Libre, has his Frio pouches for his insulin and his MedAngel thermometer to make sure it doesn’t get too hot. He has a discreet little running belt under his shirt which keeps Libre reader, his insulin pen, needles and jellybeans just where he needs them. The last five years have lead us to this point. My boy may not be exploring cultural sites of significance in exotic locations and is more likely to be busting out some dance moves in a night club, beer in hand but he is doing exactly what he wants to do, and I could not be more proud.

Meanwhile, back home, I am chilling out! I thought I’d be a wreck this week but I am not. I have slept like a baby, albeit a baby with her iPhone ten centimetres from her head, and I have gone about my day to day life feeling confident in my boy. I have been pottering in the kitchen, working my way through my fave new cookbook Ottolenghi’s Simple, finally looking at what I want to do in my free time. Next week, I’m going to go and sing in a choir. I can’t read music and can just about carry a tune but I love to sing. This choir is only women and they sing 80’s and 90’s music. I am really hoping it’s fun.

The future is here, the moment we have been waiting for. School is finished, a University place has been accepted and deferred and we are embracing our freedom in our own ways. I’m still totally here for my boy and whatever happens, I know Diabetes will throw him many a curved ball, I have his back. This he knows and, comfortable in this knowledge, we can both enjoy our FREEDOM! (Make sure you say that in the same manner as Mel Gibson in the movie Braveheart -go on!)

His hands

At birth his little premature hands were so fine and fragile with nails only part formed. There was a strength in the grip as I held him in my arms and looked at his tiny self.

He was a hand holder, always. Sidling up to me and grabbing my hand as an unsure toddler. Tickling my hand in a secret code when we both knew we were stuck somewhere but had to stay. Squeezing my hand tight to try to make me yelp in pain was followed by peels of laughter.

Watching those hands learning to master first cutlery, then a pencil and waiting for the elusive primary school ‘pen licence’ which was never awarded due to a stubborn personality streak which would not see the necessity of writing neatly.

Sport then occupied those hands: dribbling a basket ball, throwing a cricket ball, catching a rugby ball. Always amazing control, and coordination.

Then aged 13 those hands took on another role. Sharp needles pierced fingertips; a finger sometimes needing to be milked like a little udder to produce a glistening drop of blood which would then direct the course of the next few hours with insulin and carb calculations following on.

Those hands seized the blood glucose meter on the second day, jumping as the spring released the needle, eyes wide in fright as a plump drop of blood sprang out onto his finger. From then on, other than when asleep, the meter was his and his alone.

My hands have danced with his hands in various strange nocturnal waltzes in all kinds of crazy locations: from tents to long distance planes. Sometimes those hands do not want to come out, especially when tucked under a pillow in the depth of a cold winter’s night. An unsightly arm wrestling match can ensue but it is never the best of three as the meter must win, a number must be had and then sleep can be resumed.

I know these hands intimately. I know which fingers he prefers to use for checks. I know his cheeky smile as he sticks up his middle finger at 3am, half asleep. I know the part of his fingers that the needle hurts least.

Over time, the tips of certain fingers have grown hard and dots mark their surface. They are men’s hands now. Where once his tiny hand nestled in mine, both of my hands can cradle one of his.

There are times in the early morning, when I sneak in to do a check before a busy day begins. I feels his hand’s warmth and sense the pulse and life force within it. These are moments of thanks and gratitude to the universe for keeping my boy safe.

In the next couple of years my boy will leave home. I will watch him pack his bags and those hands will carry bags out of our home and into an exciting future.

That’s exactly how it should be.

The Boy and the Egg pull some moves!

So here we have it. Remember The boy and the Egg? I wrote this not long after my son was diagnosed. He spent his 13th birthday in hospital a couple of days after his diagnosis. How times have changed! And how they’ve stayed the same!

So here we are over four years post diagnosis. How is my boy and how is that Egg? I’m so pleased to report that both are intact! Initially the worry was how my boy could play sport, navigate school, hang out with friends and still manage to take care of the Egg.

These days, the Egg goes on dates. Through what I can only imagine are passionate embraces, the Egg has not been smashed. The Egg has also been there when a heart was broken. Not my boy’s, but an amazing young woman who was his first serious girlfriend! He had sat with the Egg in his hands as he tried to think over how to be diplomatic and delicate in ending this relationship. The Egg lost a fierce protector when the relationship ended but having someone to share the Egg with is not enough of a reason in itself to keep a relationship going. (Note to self, as the mother of three boys, do not fall in love with your son’s girlfriends!)

The Egg is a frequent attender of parties where my boy can hold a beer in one hand and the Egg in the other and can apparently pull some dance moves at the same time. How amazing and terrifying is that? In order for this to happen, we had to have some Egg and Alcohol sessions at home. We gradually increased the number of beers my boy had over the course of a few weeks, making sure he held on to the Egg and never left it where it could be smashed. We checked frequently throughout the night that he hadn’t rolled on it and smashed it and so far so good! We have had to be totally realistic about alcohol. We are living in the real world and facing the challenges in a way that reflects the reality of our boy’s life.

Driving with the Egg on the dashboard presents a few challenges. Keeping an eye on it and the road can be hard, especially when you are a learner and you have a parent there with you, trying to explain what to do. My boy has recently moved from an automatic to a manual car and those gear changes certainly increase the adrenalin and those kangaroo jumps can be scary and are accompanied by pleas from my boy that I stop swearing.

Working in a fast food outlet with an Egg in his pocket has been interesting. Finding a part time job that is permanent , rather than casual, has meant that employers have had to acknowledge the existence of the Egg. They have been offered the chance to be trained in Egg Preservation but it hasn’t been needed so far. The main thing is that my boy can take that Egg out of his pocket if he needs to as it isn’t a secret. He can take time out on a shift and make sure it’s alright. He gets holiday pay and sick pay which is an incredible thing at this age and offsets the lower hourly rate.

We live in the country and many of my boy’s friends live in other towns and villages which are not necessarily close by. This means he has days and nights away and as he has expanded his social circle it means the we do not necessarily know the families of these friends. Trust and honesty have never been as crucial. We have a little kit bag which serves as a nest for the Egg. When he goes off, my boy packs it full of everything he may possibly need for a couple of days and promises to text us regularly. He knows, if he has a big day or evening, that he’ll need to wake up during the night and check on the Egg.

Our boy has realised this summer that having the tiresome responsibility of the Egg does not preclude him from all normal activities. He has taken on a more active role in looking after the Egg. We are still there as the Egg Support Squad in the background but as he gets ready to finish his last year at school and move on to a big exciting future, I feel like he has the world at his feet and a good grip on that Egg!

Neither fish nor fowl

As things currently stand, I find myself in a grey area with regards to my son (and his Type 1 Diabetes). I don’t have a name for it but it reminds me of when I lived in Italy in my twenties and an older lady I worked with described her son in his late teens as ‘né pesce, né carne’ ( in English we say ‘neither fish nor fowl’) to describe that ‘in between’ state in which my son currently finds himself. This stuck in my head as a weird expression but now I totally get it and wish I could go back and have a chat with that woman.

My son is growing but not grown.

He is gaining independence but not independent.

He is both a man and a boy.

He knows everything and nothing.

He yearns for freedom but needs boundaries.

The fact that he can drive but only has Ls sums it up!

Where does this leave me? I have been there with dogged determination every step of the way since his diagnosis four years ago. He is fairly independent and he can manage his diabetes well. He knows how to calculate his insulin doses and work out the carbs in his food. He knows the impact of sport and how to adjust for this. He can go out for the day and I am not concerned.

We have a lovely way of communicating via text when face to face convos are just too emotional and hard because it does get hard. There has been no running away from that this year. Technology has helped us and some days as I sit at my desk at work and he sits on the school bus we have a beautiful little written dialogue where we let go of the worries and anger that can start off the day and we both then move on feeling much better.

He has just got on a plane to Victoria where he will play in a cricket competition for the next week. I am feeling confident that this will go well. He will focus on the important thing- cricket!

This confidence is backed up with the knowledge that the Diabetes Educator trained the two staff on the trip. There has been information exchanged by me with the family where my son will stay and he will be woken by them at 3am each day to check his Blood Glucose Levels.

He has now started his last year at school. It’s a weird system in New South Wales, Australia. The first term of the final year of school starts before the summer holidays so he has hit the ground running for his final year. This time next year, School will be over just like it is for his big brother who is currently on a ‘gap year’ to recover from the huge amount of study of the final year of School. Guffaws of laughter were heard when this idea was muted but we do get it and will be encouraging our other two boys to do the same thing.

What is my role now?

I feel like I am on the side lines: the linesman. No longer the referee on the field, making the big decisions. I watch from outside the action, intervening only when strictly required. Sometimes I let things go but at other times I need to come down hard. It is quite clear that I am now an observer rather than a participant. I am also a partisan linesman! I actively support too! I will not allow foul play and I will protect my boy with my very being. Do not mess with me!

Sourdough, Simplicity and Sisterhood.

I’ve been learning how to make sourdough and slowing down enough to enjoy the steps involved has given me lots of thinking time.

There’s a real simplicity to the process which would have frustrated the hell out of me a couple of years ago but I am enjoying it. If I rush, I get it wrong and the sourdough does not work out. I keep the starter in the fridge and on days when I’m not making a loaf, I try to remember to feed this precious starter in order to keep it alive and thriving.

I wake up at crazy times, hoping that the proofing process has worked its magic overnight and that the dough has risen nicely. It’s the best way to start the day. I put the oven on, heat up the cast iron pot in the oven and a bowl of water on the oven floor to create the atmosphere which results in the perfect crunchy crust. 

It’s a very low tech procedure which modern technology has not replaced. It seems to thrive on the love and care! Am I turning into some crazy old hippy?

All this puts me in mind of parenting! The other word for the starter is the ‘mother’. Those who are into making sourdough guard their ‘mother’ with care. Some have been on the go for generations, feeding entire families for decades  I’m sure you can see where I’m going with this.

The mother must be nurtured and cared for or the bread will not work and what is produced will become inedible.

I am nurturing three teenage sons. This requires a lot of effort, consistency and care to produce the desired results: good men! I need to be on form for this to happen. If I am not taking care of myself then I cannot look after my boys. 

As part of what I do, I am the mum of an almost 17 year old son who has Type 1 Diabetes. Whilst his brothers are equally loved, there is an extra element of care needed here. It is what it is! He takes care of himself and I’m looking ahead and trying to envisage a time when he leaves home. In the meantime, I am catching a few early morning lows as I get up to put on the oven and the thinly sliced sourdough and egg combo that we’re having for brekie seems to be agreeing with his bgls. That’s what we call a win, win!

The Diabetes Australia #WDD2017 campaign #SuperSHEroStrong caught my eye today just as I was kneading my sourdough and so I would like to send my love, my thoughts and a whole heap of sassy sisterhood out to all the women in the diabetes community: those who have diabetes, and those who support others with diabetes too!

Hello, I give you my son’s heart and his non functioning pancreas. Please treat both with care!


Hello, you don’t know me but I know that you know my boy. You two spend hours on snapchat and messenger chatting about who knows what. I know there have been face to face meetings too. I think it’s time we had a chat! 

Here is a little questionnaire I’d love you to complete. Don’t look alarmed! It’s all cool!

Part A) Stand on one foot and answer the following questions whilst hopping:

– 24 + 57 + 63 + 82, then divide by 2, then divide by 15. Got that? Good girl! 

– 29 + 81 + 12 + 75, then divide by 3, then divide by 15. Still going? Well done! You may proceed to Part B.

Part B) How deep a sleeper are you? How many hours sleep do you average and do you wake up to alarms? Please write your answer in the space provided below.

Part C) Do you prefer routine or have more of a devil may care attitude to life? Think back over the last week please and write down the times at which you ate breakfast, lunch and dinner?

Part D) Imagine you had a cute boyfriend. For easiness sake let’s call him ‘son of mumoftype1’! A bit of a mouthful, I know but bear with me please! Imagine this boy suddenly collapsed. Which number would you call? 

Part E) If this boy felt brave enough to tell you that he had a medical condition called Type 1 diabetes, how would you respond? Circle your preferred response.

– nod your head and ask a few simple questions.

– say “that’s what my best friend’s uncle had and he died.”

– run

Part F) If you have made it this far, you are a keeper and I ask only one thing of you. Please don’t break his heart! 

Times they are a changing as the song says! I am really enjoying seeing my boys turn into men but I have suddenly become aware of how important a role potential girlfriends may have. Excuse my tongue in cheek look at this!