Companion

I’m the mother of three boys, two of whom are young men and the youngest is quickly catching up. My role as a mother is changing all the time.

When my middle son was first diagnosed with Type 1 diabetes almost six years ago, much of my role as a parent revolved around counting carbs, trying to calculate the correct amount of insulin depending on the ratio for each meal and allowing normal food choices whilst attempting to have some awareness of foods which could cause spikes in blood glucose levels. It was my role to count and calculate, to monitor and often to worry. Trying to take the stress out of managing this condition for my son, fostering honesty and an open dialogue and accepting that perfection was not expected was how we rolled. I walked ahead of him, protecting him, sometimes acting as a buffer from those who did not understand. I was fearless and afraid of no one but it was exhausting too!

My son was diagnosed a week before his 13th birthday so diabetes has been a constant throughout his formative teenage years, years when his friends were free to experiment and explore. As parents we never once stopped him from doing anything that he wanted to do. Not once. He played multiple sports, had a part time job, learned to drive, went to school, travelled across Australia and to New Zealand for school and club sport, traversed the world for family holidays and had a very active social life.

This did not always lead to a beautiful in range line for his Blood Glucose Levels but it did produce a young man who knows he can do anything. We were judged harshly at one point for the way we did things but we felt empowered enough to walk away from that judgement and find people who better understood our son.

We were always there beside our boy and we were in it together. When he reached 18, we did not suddenly leave him to manage alone. In the lead up to his 18th and in the subsequent months we have had a ‘planned withdrawal’ and by that I mean planning with him to gradually hand over the responsibility of his diabetes. He also swapped the health care team he was with around the same time and that was such a positive step. If our son wanted us at his appointments with his diabetes educator or his endocrinologist then we were welcome. This worked well and a year later he attends appointments on his own but if he ever wants us there then we will go and are welcome.

Reading Leigh Sales’ amazing book ‘Another Ordinary Day’, really helped me to process what my role should be and seeing her speak in person at the Byron Writers Festival was a true fan girl moment for me. She spoke with quiet wisdom on how to help those around you who have had something awful happen in their lives. She talked about how we, as outsiders, can only accompany and these words stayed with me. I wish this book had been written when my boy was diagnosed. I feel sure I would have garnered strength from the stories of the people in the book and more importantly from their survival and resilience.

I love my family, I love bread and I love words! I teach languages in a high school so looking for just the right way to say something in English, French or Italian is how I spend my days. Nuance is everything!

Outside of work, I make sourdough. I’m passionate about it and slightly obsessed with keeping my starter going. The process of making it is quite complex, making me slow down and think as I go through each step. There is nothing quite like the moment of reveal when I take the lid off in the oven and see what is produced. Gifting loaves to friends and family never ceases to give me joy.

In class the week after the Byron Writers Festival, I was talking with a French class about the different words for friends in various languages : friend, pal, mate, chum, buddy etc and then we looked at the word ‘copain’ in French. The previous week my senior French class had shared a loaf of my sourdough with me in a lovely moment of connection. We often talked in French about what we had done on the weekend and my recount usually had the sourdough process in it somewhere. They challenged me to bring some in so I did, along with some Aussie unsalted butter and a jar of Bonne Maman Caramel Spread. Ah, the joy in their faces! As we ate, we talked about how the English word ‘companion’ was linked to ‘copain’ in French and how special the simple act of sharing bread was, marvelling at the magic that can occur when you mix flour and water.

In the last year, some of my friends have had some awful events occur in their lives, some dramatic and others quietly painful but, having read Leigh Sales’ book, I feel much better prepared to know what to do.

I have had many wonderful people accompany me as a parent of a child with diabetes. Their presence, be it online or in person, allowed me to question, to express my emotions and to learn what to do best to help my son and to survive. Their lack of judgement, even when I fumbled about awkwardly, their reassurance that I could handle it and their infinite advice when I sought help got me through.

With my son, I now see my role as a companion too. I walk beside him. I am there for him. I will nourish him with my love and with my sourdough too. Accepting that he does not always want me to accompany him has been difficult for me, if I am entirely honest, but I know I must step back and let him go. As parents, our heads are full of all the horror stories of what can happen to people with diabetes and we are given the task of making sure this does not happen. I feel sad when parents are criticised , especially as they move from being the parents of children to being the parents of young adults. When it feels like your raison d’être has been to keep your child alive, handing over sole responsibility to your child at a time of experimentation and constant change is not easy or simple. We are still a work in progress in our home but we are figuring it out together and as my son takes on more of the responsibility, I am freed up. This too is bittersweet. I can no longer share the burden which my shonky gene pool created but I am happily filling my free time.

If you have taken the time to read this then you too are a companion and I thank you for your company.

Stepping out of the buffer zone

My son was diagnosed with Type 1 diabetes a few days before he turned 13. He is now well into his eighteenth year. What a huge five years they have been and now seeing him as a young adult, I cannot help but reflect back on those years.

I spent those years in the buffer zone, protecting my child from the world. I was thrown into understanding the complexities of diabetes when my son was diagnosed; learning about carb counting and insulin doses whilst he concentrated on learning how to give himself insulin shots and check his blood glucose levels. This teamwork continued through the first few years with my boy gradually learning more about carb counting and how the various activities he did impacted on his blood glucose levels. This felt like a fair exchange. He was able to go about his life and I was the person who kept in touch with health care providers and school.

Being a teenager meant that the path was sometimes bumpy but we encouraged our boy to live a full life, as we did with our other two boys, in the full knowledge that perfection was not a prerequisite for our full love and support. Sadly, we did not find that all the institutions around us were quite as understanding. There’s something about being a teenager and having a chronic condition. It felt as if my boy had used up all his graces in one fell swoop and was expected to be a model human being in all areas of his life. I struggled with the expectations put upon my child, whilst trying to keep him safe. That’s when the buffer zone was a horrid and lonely place to inhabit.

Zoom forward and now school has finished, a University place awaits him next year and a new health care team is in place. I no longer feel like I need to be a buffer. Harsh judgements are not meeted out and thought is given to the person behind the diagnosis. My son is as safe as he can be.

He is a strong capable young man who can now deal directly with the world. He knows his dad and I are here for him always with open arms and no judgement. He is now an unofficial mentor for a young boy who also has Type 1 diabetes. This young boy comes over once a week and does his homework with my son. The focus is anything but diabetes. Spelling words are practised, times tables worked on and footy discussed but underpinning that, a lovely quiet connection is building which I hope will last for many years.

What do I do now with all my new found time? I am totally relishing it! Baking daily sourdough, cooking my way through the latest Ottolenghi cookbook, getting to hang out with my man, spending time with close friends and occasionally enjoying being alone for the first time in years. Who knew it? I quite like my own company and the silence and peace it can bring.

I haven’t quite figured out what to do with my online identity as ‘mumoftype1’. The diabetes online community has given me so much. When I felt totally lost and isolated, both geographically and emotionally, I found support and learned from people with real lived experience what I needed to know to keep my son safe. I have made friends and slowly got to know more about people than their connection to diabetes.

People come online asking the same questions that I asked a few years ago. It takes me right back to where I was. Did we get everything right in that time? Absolutely not, but we got there! Sometimes I reach out and through this have made some beautiful connections but I don’t have all the answers, and I do not have diabetes. My son’s story is his to tell and my focus when writing has always been about my role as the parent of a young person with Type 1 Diabetes.

I feel so many different emotions as I write this but overall I feel such pride in my boy and in our family. I know the future will unfold with its own challenges but I know we will be fine. For that I am so very very thankful.

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.

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! 

Celebrating being average!


I am average, my kids are average, most of my life is fairly average and I commit to celebrating this! We need to celebrate the average! Why is being average frowned upon and overlooked when that is what most of us are? This is my own personal protest cry for common humanity! 

I have three fantastic kids who are average and I am not ashamed of that. I hold my head up high and I love them with every ounce of my being. They go to school and do all their work, they play multiple sports, they have friends and people tell me they are lovely, polite boys. Why should I be made to feel that this is not enough? 

There is such pressure on our children to excel at everything or at the very least at something. Why are we not content to be what we are?  I see friends putting their primary school aged kids into tutoring to try and pull up their grades. These kids do their regular homework, then plough through the revision sheets issued by tutors. Their haunted little faces pain me as they are drilled to within an inch of their lives and have such high expectations put upon them to always do better. What skill set do they need to have for their future lives? Are they going to be astrophysicists or elite athletes? Why do we always seem to demand more and more of our children when they are already giving us their best effort but the results are ‘only’ average?

I certainly do not mean that kids should not excel. If your kid is in the gifted and talented category, good on them but for the love of God, please stop dropping that into the conversation! I get it you are proud and so you should be but I am equally as proud of my three children. I have tried to help each of my boys find something they can be passionate about. For them it is sport, in various shapes and sizes. 

I have decided to withdraw from this pressure! It feels so liberating but it is hard and I do need to keep myself in constant check. 

What caused me to rethink? 

Three years ago, my middle boy was diagnosed with Type 1 Diabetes. His life and our lives changed and numbers took on a far more significant role. Every day, my son checks his blood glucose levels multiple times, we calculate the number of carbs he is going to eat and from that the insulin dose he injects is calculated. He is growing and is very sporty so these calculations are constantly changed and modified in order to try to keep his levels in the sweet 4 to 8 mmol (72mg-144mg) range. Every three months an average is taken and we find out the results of the all important HbA1c. I’m sure many people (and/or their parents) with Type 1 Diabetes would acknowledge a certain nervousness when they are about to get this magic number. 

The night before this result is given, I feel sick and cannnot help but think back over the previous three months. We try so hard to keep those blood glucose levels in range, but real life gets in the way. Sport, illness and being human all interfere and I lie in bed picturing a big  zig zag with high highs and low lows. My son tries his hardest and so do we as his support team. It doesn’t matter what that number is, there is nothing we could have done differently.

When school reports arrive in the middle of a life full of numbers, it really makes me think. Don’t the same things, sport, illness and being human, impact on these school results? Yes they do and so I commit to stressing less about grades and results and as long as we are all trying as hard as we can most of the time then that is absolutely good enough!

King of the Road

Our eldest two boys are only 17 months apart in age. It’s almost like having twins. 

We live in New South Wales, Australia. When you learn to drive here, you firstly do a computer based theory test to make sure you have the knowledge of the rules of the road. You can do this as soon as you turn 16, get your Learner licence then you have the minimum of a year in which to do 120 hours of driving practise. Once you have turned 17 and have done  your 120 hours, you can sit your practical test in a car with an examiner and then you gain your P plates which allow you to drive alone (with some other restrictions on speed, passengers and alcohol consumption thrown in to keep you safe). Got that?

Our eldest got his Ps last year and has now gained the nickname Über. After surviving 120 hours in the car with him, he owes his loving parents a few lifts here and there.

Onto number two child, with the added complication of Type 1 Diabetes thrown in. 

Number 1: 

Getting your L’s – a letter is required from an endocrinologist or paediatrician. A sight test is needed here and, from what I can understand, this letter basically lets the authorities know that the person has controlled diabetes. From what I’ve understood, this letter is required to be submitted every year. How and where I have yet to figure out.

Number 2:

Working out the rules around driving with Type 1 diabetes. You would assume that the Roads and Maritime Services who issue the Learner’s licence would be able to tell you that. Wrong! After googling myself into a zombie like state #OzDoc came to the rescue. Serendipity is a wonderful thing as the topic on the Tuesday night #OzDoc twitter chat was driving. I was given advice on how to help my son with hypos and driving, the documents we needed to read and so much more. How amazing is it to be in rural NSW where you don’t really know anyone else with Type 1 diabetes and be able to quickly get the advice you need to help your child.

Number 3: 

Navigating the numbers. The first couple of hours of practise went well. My boy is a natural and unlike the first few outings with his big brother, I did not swear once!  It’s been so lovely to spend one on one time with him driving around our beautiful area, whilst chatting. When it came to the third time going out, he checked his BGL and was 4.8. What to have? 

There was no advice quickly available online about how to get that level up to 5.0 without pushing it too high in the other direction. A fast acting hypo treatment seems to go against all we had ever done, given that this 4.8 was in the lovely normal range. I puzzled over this then asked on twitter what to do. Several lovely tweets with suggestions came back and from those, my son’s preference is to have a freddo frog. Good choice!

The next day was accompanied with an unexpected hypo just as we were about to go out. Things suddenly felt more complicated. Have a hypo treatment, wait till the level comes up to 5.0 then wait half an hour and check again. This took 45 minutes and the window of opportunity to drive had closed.

Number 4:

Finding a sympathetic driving instructor. Actually, this turned out not to be such a hard thing. We had used this instructor for our eldest child and knew he was a good man. I sent him a text to book in our second son and let him know he had Type 1 diabetes. I sent him the link to the NDSS document ‘Above 5 to Drive’. 

A short while later, I received this text: ‘Had a read of the link and thanks for the info . I will take care of him and tell him to always say if there’s a problem. And if he ever needs to cancel, even if I’m at the house, it’s all good with me and tell him never worry 😊’. Wow, wow and wow! Imagine a world where this was the normal reaction to Type 1 Diabetes.

Ok, 4 hours done, 116 to go!

Heroes can be gloriously everyday and wonderfully ordinary

Today I read the following blog from Insulin Nation. It really made me think, as this great site so often does. Have a click and see what you think. I love articles like this which make me question what I do. This article, from what I understand, discusses the idea of diabetes heroes and conquering warriors and how these images may have a negative impact on those who struggle with this condition.

From my perspective, it all comes down to how you define a hero.

The success of  beyond type 1 all across the globe, and in particular their Instagram campaign,  highlight the need for everyday heroes. It fills me with joy to read about all the people who have Type 1 and the things they do. These are people with whom I can often identify. I see my son in many of them and I love it! 

I am the parent of a 16 year old boy with diabetes. It is complex raising a child with Type 1 diabetes. Our aim has always been that diabetes would not stop my son doing anything. I honestly do not believe that his diabetes has stopped him doing any thing. That is what I believe is heroic.  I need my boy to see the length and breadth of his future and the endless possibilities which are open to him. It’s my job to sweat the nitty gritty of how this will be done and work with him and our team to figure out a way. He has days when he feels awful, when no matter what he does, however carefully he counts his carbs and measures his insulin doses, things just do not go his way. He does not dwell on these so neither do I. 

I don’t need to see elite athletes or super stars doing things, although it does give me a weird thrill when I find out that someone famous has Type 1 diabetes. James Norton, the extremely gorgeous actor from Granchester is one example.

Being heroic for me doesn’t not mean that my son conquers Type 1 Diabetes: it means that he lives a full and happy life despite having this condition. 

Being heroic means accepting the shit that goes along with this and doing what you need to do. No one is a loser if this doesn’t always go smoothly. Getting through two hypos and getting yourself out in the garden to smash your brothers at cricket is the example I am looking at through the window as I type.

Being heroic means feeling scared, knowing all the negatives that the media constantly presents and keeping going despite this knowledge. 

Being heroic doesn’t need to be big and amazing. It can be gloriously everyday and wonderfully ordinary. That’s what makes it beautiful! 

Veni, Vidi, Lusi, Vici 


Veni, Vidi, Lusi , Vici- I came, I saw, I played, I won!

 If my son had a Latin motto it would be this! Julius Caesar take a back seat! 

There is none so fierce as a 16 year old boy determined to play cricket like a pro.  A flight was taken to another time zone.  Night time lows and day time highs were navigated with unintrusive help. Carbs were counted pretty successfully. The results of each game (read ‘battle’) were dissected on the side of the field.  Whilst cricketing tactics were openly discussed, my boy waged a silent campaign.  

He fought off heat, then cold. He made intricate decisions based on activity levels. The war, however, was not won by type 1 diabetes. My boy owned his diabetes and he dominated it!   He took a big step towards independence. The team performed well in a tough pool but the actual results of the games don’t really matter as the real victor is safely tucked up in his bed, back home with us, smiling to himself and reliving  moments of glory on the field.

Letters of hope

I need to give thanks and be grateful. I need to repay some of the kindness shown to us by the local community. After thinking long and hard about how to do this, I decided to make up care packs for the families of children newly diagnosed with Type 1 diabetes in our area. These will be given to the diabetes clinic for them to distribute. They average around fifteen diagnosis a year in this country hospital so it is manageable.

I’ve got:

A lovely calico tote bag – useful for carrying all the bits and pieces, such as log books, and spare meters which are needed at clinic and endo appointments.

A hardback notebook- useful as a journal, to write down carb counts for recipes or list the many questions needing to be asked in the early days or even to throw at walls.

A decent pen- who doesn’t like a nice pen?

A symbol of hope or love- just to let people know they are not alone .

Letters of Hope – totally the most important inclusion. To be printed out on nice paper and put in a fancy envelope.  Messages sent  via twitter to many of the amazing people I have come in contact with through #OzDoc and other people who have blogs about their own or their child’s diabetes, have resulted in quite a few offers to contribute Letters of Hope. I feel so lucky to have met these people and I know their contributions will really make a difference to newly diagnosed children and their families.

Writing my own Letter of Hope was such a positive and affirming experience for me and if it helps just one person then I will be happy. Here is my letter.

…………………………………………………………………………………………………………..

Hi!

How are you? Silly question, isn’t it? Your child has been diagnosed with Type 1 Diabetes. Do you feel exhausted? Are you wondering what your life and the life of your child and family will be like from here on in?

I understand! Not many people will get what you are feeling right now but I have a bit of an idea as my child was also diagnosed with Type 1 Diabetes. I sat in hospital almost three years ago and could not get my head around my son’s diagnosis of Type 1 diabetes.

It does get better and you will survive, please know that! You need to be so strong now and that is hard. Your child will no doubt be looking at you for cues on how to react. Please try to keep it together in front of them. I shed quite a few tears in the Parents’ Room but I really tried my best to keep my act together in front of my son. Right now you are all in this together, learning about insulin, carb counting and trying to get your heads around your new reality. You will learn lots and you will get there!

I have a really vivid memory of being told to fit diabetes into our lives and not the other way around. I have kept this in my head now for almost three years. When my son asks me if he can do something, I ask myself if I would have let him do it if he didn’t have diabetes.

I can honestly say there is nothing he hasn’t done because of his diabetes. He plays multiple sports, he now has a part-time job, he has had sleepovers at friends’ houses, and he has gone on school camps. I would never have believed any of this was possible but it has been and he has enjoyed every single thing he has done.

How have we done this? Since diagnosis, we have worked with the diabetes educator to figure out how to make it happen. It hasn’t always been smooth sailing with the school but I have learned not to give up. I am polite but insistent and just keep asking until it happens. Be kind to other people who don’t get it but when it comes to the rights of your child, the school has a duty of care. The real world, after school, will come soon enough but in the meantime, you need to pull up your big girl or boy pants and stand up for your child. Lots of teachers are fantastic and open to learning. It’s not all bad!

As we have progressed through the years, my son has taken on more and more of the responsibility of his diabetes but I am there in the background, checking how things are going and asking a few, sometimes annoying, questions. He is a teenager; he does make mistakes but I never blame him as I don’t want to lose his trust. We talk about numbers and try to figure out why they might sometimes be too high or too low then we try to fix it. When I first see him after school, despite an almost overwhelming desire to find out what his levels were all day, I ask him about all the other stuff in his life. We keep his diabetes kit on the kitchen bench so I will look at his meter later or ask him about his levels as we get ready for dinner.

Language is weirdly important to me. To me it’s clear that my son ‘has’ diabetes, he isn’t a diabetic. He doesn’t ‘suffer’ from diabetes, he thrives despite it! I try to talking about ‘checking’ his blood rather than ‘testing’ it. It’s not a pass or fail! These are small things but they give me perspective and take the blaming away.

Accepting imperfection is a big part of the deal too! You can have the same set of circumstances two days in a row and get two entirely different results. Don’t torture yourself about that. Life should go on, don’t stop doing things (unless of course the blood glucose levels are really high or low) but do get help from your diabetes team. We have had crazy days with bumpy BGLs but nothing has gone wrong: school is still attended, homework is still done (yeh, it’s a bummer in my house, a chronic condition still doesn’t get you out of doing homework), friends come still around, sport is still played and still no hospital admissions for diabetes.

In the midst of the madness, take care of yourself. You are still an important person in your own right and, as much as it can seem the opposite, you are not defined by your child’s diabetes. I go for walks. It’s free, can be done at any time and as much as I have to force myself, I always feel better afterwards. Initially I had to force myself to go and have fun. I thought I’d never have more than one glass of wine ever again. How could I leave my child to go and do something for myself? Eventually, I did go out, I may even have had two glasses of bubbles and guess what? My son survived and barely noticed my absence.

Not everyone will understand what you are going through. Even your closest family and friends will not get it at times. That feels really hard as your child’s diabetes is dominating your every thought at the start. Over time, I probably did lose a few friends but the friendships I have now are stronger and it was probably better that I didn’t head butt the friend who kept saying, ‘Well, at least it’s not cancer!’. Safe to say, we no longer hang out as much! Saying that, I didn’t know much at all about diabetes before my son’s diagnosis so I try to keep that in mind when people say silly things and downplay the reality of diabetes.

Diabetes is an invisible disease and your child looks horribly normal and so do you! You will become like an elite synchronised swimmer: all smiles above the water but a frenzy of activity below. That’s the gig! Eventually the smile will be real. You will all have fun, you will most likely become a nicer, kinder, more understanding person and so will the rest of your family. In the mean time just keep paddling your legs!

Know too that as you go through what you are doing, there is a whole community of people, young and old, out there who are doing the same things. You might never meet us but we are out there, fighting the good fight, staying strong for ourselves and our kids and turning these heroes into amazing adults with fantastic futures ahead of them!

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If you would like to send me you Letter of Hope, please leave a message and I will get back to you.