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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My Diabetes Family – Growing up with the #doc

My Diabetes Family

I keep seeing this #mydiabetesfamily on Twitter and on other Social Media and it’s got me thinking about who my diabetes family is. Considering that I do not have diabetes, why am I even asking myself?

My middle son has had Type 1 Diabetes for almost five years. He celebrated his 13th birthday a couple of days after he was diagnosed, becoming a teenager whilst in hospital (cue the gift of a denim patchwork quilt, made by a local sewing group, which is still over the end of his bed).

My son’s diabetes family is small. It’s us! His mum, his dad and his two brothers. He lives with diabetes every day but it’s not part of his online presence. That’s all the family he currently wants or needs. He sees his medical team: an endocrinologist and a diabetes educator and they are his medical diabetes family. He is busy living his life, does what he needs to do every day and I think he does an amazing job.

My need for a diabetes family has been much greater than his. I also absolutely believe that the diabetes family I have around me has helped me to be a better mum to him.

I’ve always kept my online presence as anonymous as possible. I don’t ever post my son’s name and never post photos that would identify us. Strange isn’t it that here I am then, with a fully functioning pancreas and what I believe is the most amazing diabetes family?

I feel like I’ve passed through all the stages of life with my online diabetes family. I stumbled onto the scene like an awkward teenager having written poetry and feeling very needy and in need of reassurance. I am so lucky that my clumsy and sometimes misinformed attempts to connect with people did bring me into contact with the #doc and more locally #ozdoc.

I found some great people to mentor me, read some amazing blogs and survived my “diabetes teenage years” as my son turned into a young man. I am so absolutely grateful for the patience that people showed towards me, for the advice, for the positive comments my blog received and most of all for the connections across the world that stopped me feeling so alone.

The next stage, was where I came into my ‘adult diabetes years’, becoming more of an advocate for my son and also for issues affecting the diabetes community. I got more involved, campaigning locally for CGMs for all those with diabetes and having some good conversations with our local MP. I also felt like I needed to pay back into this community and into the search for a cure or for research into ways to live with diabetes. Every year I’ve held a fundraiser for JDRF and with a great bunch of women. We put the ‘fun’ in fundraiser every year. This event allows me to reach out to around 50 top females and quietly educate and raise awareness while we drink bubbles and have a great afternoon together.

I’m fading into the background now, I’m trying to embrace my ‘middle aged diabetes spread’. I don’t write so much any more. My boy is almost a man. My job will never be done with any of my boys but it feels like I need to step back and let him go, well, as best as I can. The maternal tug will always be there. Some of what we have gone through in the last year has been heart achingly horrid and other parts have been amazingly positive but these are not my stories to tell. That’s my boy’s narrative and should he choose to share it one day, that’s his choice.

The contacts I’d made on #ozdoc and #doc and the invaluable advice received in private messages gave me the strength and courage to act on his behalf. Without this, I hate to think of how we would have survived. The very survival of these hard times, allowed me then to privately share some of the wonderful moments with people and make even deeper connections with some. My thanks are heartfelt and deep to those who were there for us.

There are a couple of mums, one in particular, who I’ve met on Twitter and we have been there with each other every step of the way. Chatting online through the night and sharing jokes and hopes and well as frustrations and doubts has meant that I can function fully and happily in my day to day life. We have plans to meet up one day and that would be just fantastic!

What I didn’t realise until recently is that I have become part of the ‘diabetes family’ that other people have. Over the last year, some people have made contact and let me know that they enjoy reading what I write. This was unexpected and such a beautiful surprise! I was backing away from Twitter and blogging as I’m not really sure what my role is going forward but I’ve come to realise that, in small ways, I can help others and perhaps be there in the background for them just as others were for me. Not quite a wise elder but more of a crazy Scottish sweary mammy whose heart is filled with love for this big worldwide community that’s been thrown together by diabetes. I salute you all!

Control

Control! Wow, how this word has taken on such a different meaning and has such a different effect on me since my son was diagnosed, almost five years ago, with Type 1 diabetes.

Control – I used to think it was the supreme power I exercised not to eat the last slice of cake.

Control – the amazing ability my boy has had to manage his emotions when judged by those who do not understand him and the effort he makes each and every day to live a life with Type 1 diabetes.

Control – the special power I now use to keep calm when people judge my son.

Control – something that, as an outsider, I can see is very difficult to have in relation to life and living with Type 1 diabetes.

Control – a word not used by people who understand the complexity of life with a chronic condition.

Control – The thing I did not recently exercise of my eyeballs when my son was treated with respect and dignity by health care professionals who were working with him. The tears momentarily flowed in gratitude then we all smiled.

Control – the huge capacity my son has to put up with me checking in on him and asking how he is doing in all things in life but especially in relation to his diabetes. The supreme effort he puts in not to roll his eyes as I gradually try to ask those questions less and let him take over. It is so very, very hard to do this after five years of being there, every step of the way.

So, I say, Feck calm and WTF is control anyway?

Diabetes Billboard

Diabetes is a billboard in my life.

Sometimes, it is on the side of the road and I see it there, reminding me of things that need to be done to help my son who has Type 1 Diabetes. As I drive to work its presence in the distance will remind me that we need to book an eye appointment for him, or that he is about to run out of needles for his insulin pens.

Some days, it’s a bit closer to the side of the road, when I’m seeing how many things my son needs to do and I know some days this is hard for him. Those days I’m very aware of it as I work out how to best help my boy do the things he wants to do.

Other times, like recently, it felt like my nose was pressed right up against that billboard hiding everything else from my view, stopping me from moving forward. I don’t have diabetes but after five years of watching my son live with it, it can loom large in my world.

When your child is growing and changing, doing their best to live a full, active life with a chronic condition, so many judgements are made. Some lack an understanding that there is a person in the middle of this condition.

Loneliness and total despair only begin to describe the feeling of having your nose pressed up against that diabetes billboard. I can only imagine there are many others out there who have felt the same. What choices do you have when it feels like there is no way forward? The only choice is to look back over your shoulder.

I was so busy looking ahead, trying to figure out how to get through this horrid time that I hadn’t thought to do this until crisis point was reached.

When I looked over my shoulder, I discovered a small unexpected group of people out there, following at a distance. I found comfort and knowledge in their open arms. I just needed to ask, and through their wisdom, love and support, calm returned and new way forward was found.

I am so thankful to this small crew of amazing people. They know who they are and the support they gave to my son and to me. I will never forget this and next time I will know to look over my shoulder. You should try it, you will hopefully get the best surprise.

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.

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!