Try

My boy was diagnosed a couple of days before his 13th birthday and he turned 18 at the end of last year. He’s turned from a child into a young man during these five years and had Type 1 diabetes with him all the way.

I’ve been thinking back over the ups and downs of the last five years and wanted to write down some things I wish I’d known:

  • Numbers do not define your child or you. Your child is not a number and the numbers that come along with diabetes do not make you a good or bad parent. They are numbers, your child is not a number and you are as a parent should not be defined or define yourself based on these numbers.
  • Blame, jeez, I hate this word. There should be no blame. Not for less than perfect blood glucose levels or HbA1c, not for your faulty gene pool, not for anything around the management of diabetes and especially around the numbers which dominate so much of your role as a support person. Watch the language you use around your child in relation to diabetes, as some of the traditional language used around diabetes contains implicit judgement. I was so lucky that the #LanguageMatters movement came about not long after my son was diagnosed and it helped me hugely to talk in a way that did not judge my son. “Testing” soon became “checking” and I eliminated words like “control” from our vocabulary. More than this though, I understood it was a mindset and continue to be careful in the language I use around my son.
  • Perfection is not a goal and if it were, it would be a big dud of an own goal! It’s more than likely that despite your child’s and your every effort you will not hit targets set. That’s the gig and accepting this sooner rather than later will make life easier.
  • Love. Love your child and yourself and all your imperfections. All the crud that goes around diabetes will swirl around you in an ever changing maelstrom but at the centre of that, hold your child close to your heart.
  • Question authority if you need to. We found ourselves in situations where we lost trust and felt badly treated. It is alright to walk away from a situation where you feel your child is not being cared for in a way that you feel is appropriate. You are not powerless even when it may feel like you are. I wish we had made changes much sooner.
  • Believe in your child. Despite the scary stories and terrible things you hear about diabetes, your child can live a full and happy life. All the hurdles that I imagined in my head, from going on school camps, to working part time and even going out drinking all happened and my boy is still here, sticking his middle finger up at the universe.
  • Sit with the sadness. Your child’s life, despite your and their best efforts, is not quite what you thought it might be. Sometimes I allow myself a sad day where I acknowledge this, and let myself feel the darker side.
  • You are not alone. Find your diabetes tribe: ask for support when you need it and try to be of support when you see similar struggles in others. After one terrifying Google search, I had avoided Social Media when my son was first diagnosed. Some time later, I stumbled upon a couple of blogs, and then started to write my own. Writing, really helped me process how I was feeling as the parent of a child with diabetes and it brought me into contact with other amazing parents and people with diabetes. I was given real practical help when we reached a crisis point and also private emotional support which totally helped me understand what had occurred and allowed me to process it and move on.
  • Think carefully about your online presence, as one day your child may read what you post. I always have this in my head when I write and try to focus on issues from my perspective, as a parent. My online presence is anonymous, other than using my first name on Twitter. I have never written about my son’s HbA1c or posted his blood glucose levels. There are no photos which could identify our family or him. For me this has been important.
  • You are strong. When you have a child with Type 1 diabetes, you learn how strong you can be. You have no choice but to help and look after your child and can survive on minimal sleep, hold down a job, maintain a relationship with your partner and some friends and do all this whilst constantly being aware of everything your child is doing.
  • Your child will be fine. You have spent years waiting for the day they can become independent young adults. You have been a team, working together, learning about how their body responds to so many different variables. They know how to do this and they know that they have you too, whenever they need you.
  • You will be fine. As my son said to me recently, “Chill mum, I’ve got this.” And I took a bit deep breath and said to him,”You know what? I think you do!”.

That’s all we can do, each and every day. We may get it wrong, we may stumble and make mistakes, but we put one front foot in front of the other and try!

Advertisements

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!

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!)

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!

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.

Growing Diabetes Balls

I hope you don’t think me indelicate, but I need to talk to you about my balls! I may be a middle aged mammy but I own a beautiful pair of diabetes balls. They started to form when my son was diagnosed with Type 1 Diabetes. I didn’t know what was happening! I had strange outbursts and surges of rage. Then, as they do, my balls dropped. Now I keep them tucked away in my handbag, nestled in beside the jelly beans and the glucagon.

They only make an appearance when needed. I know my son finds it rather embarrassing when I need to get my lady balls out, and I wish with all my heart and soul that I never needed to see them again. Making sure my son is safe, especially in the context of school, has been a large part of my raison d’ĂȘtre for almost five years.

Keeping him safe has meant standing up to his school, making myself unpopular at times. It has meant taking chances to gently educate those around me when opportunities arise. It has meant quiet conversations with my son’s friends to ensure they are aware of what to do if he needs them. This has taken balls as it would have been so easy to say and do nothing.

If only we lived in a world where people understood better: where diabetes, of any description, was not the butt of jokes, where schools understood that having diabetes does not preclude a student from being a normal teenager, where you didn’t need to be really brave and stand up for yourself or your child.

Now I come to my rather delicate issue. I need to help my boy grow his own pair of diabetes balls. He will finish up with school and the children’s diabetes clinic at the end of the year. He will then be working for a year, and living at home before he moves off to university the year after. That’s the current plan!

I know I would say this but he is an amazing kid. He was diagnosed a few days before his 13th birthday, almost five years ago. This was just at the time where he was gaining independence: going out for the day with mates, taking off on his bike with a few dollars in his pocket for lunch, having sleepovers. He took that independence and ran with it, continuing to do so for almost five years. He is always busy doing something: multiple sports are played, he drives, has a part time job, is in his final year of school and in the last year, he parties and drinks beer!

How do you teach your child not to be embarrassed, especially as a young adult dealing with news situations?

How do you help them to find their voice ? To avoid getting into dangerous situations by being brave enough to speak up?

This is the challenge for him and for me.

Talking of balls, just so reading this was worth your while, I though I’d share some more balls, this time in the form of a recipe. These are a favourite in our house.

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!