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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