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. I’ve written about the Boy and the Egg quite a few times if you’d like to read them please click on these links:

The Boy and the Egg Part 2

The Boy with the Egg is growing up

The Boy and the Egg go on an Overnight Trip

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 possible 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!

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Future perfect

This time of year is all about looking ahead. My eldest boy has finished school and has commenced a physically demanding, full time job for his gap year. My youngest son is approaching his 14th birthday and is still a total, joyful delight having not yet entered the ‘tunnel of puberty’. Things with these two sons feel quite settled.

My middle boy who has Type 1 diabetes will turn 18 at the end of this year. Is that the age of maturity? Time alone will tell but I am a realistic optimist by nature!

By the end of this year he will have had ( I had to get an example of the future perfect tense in here somewhere!) Type 1 diabetes for five years. It has accompanied him through puberty, sending him on a BGL roller coaster for a couple of years. He has grown from a spindly legged little whippet into a into a slim, 6′ 5″, mini moustache sporting giant.

This year is all about the next stage in getting ready for independence as he will most likely leave home to study in 2020. We struck a deal before Christmas that we would give him the independence he craves so much if he showed us that he would take over certain aspects of his diabetes care.

The biggest two areas were: following the insulin doses for each meal and writing down his blood glucose levels three times a week. I know from experience this year that if these two things are in place then everything else generally seems to flow nicely . Writing down those levels is a right royal pain in the bum, and it’s something I have largely done over the last four years. It doesn’t bother me but it’s not related to anything in my body and being one step removed from what those numbers mean must make it easier, I’m sure. We do need those levels though, as through all the changes related to growing, exams, stress and sport, we need them to work out changes in insulin doses.

My boy is absolutely and with total certainty against using a pump or a CGM. I would have loved for him to try these forms of technology, especially the CGM, as I think he’d be surprised at how it could help him, but it’s not my gig. I used to dream about how these devices would help, but at the start of 2018, I’ve decided to let that all go. So much of what I read online relates to pumps and CGMs. As a parent of a child who does not want these things, I cannot help but feel excluded from many of the discussions. I feel like I know a fair bit about both but I will need to take a step back from all that, stop putting subtle (okay, sometimes not so subtle) pressure on my boy and allow him to take the lead. He has shown the tiniest spark of interest in the FreeStyle Libre since he heard that it can be used for insulin dosing. I am saying nothing and waiting for him to make any decisions for himself.

This means that when he goes out he takes our absolute trust and full control of his diabetes management with him. Easy eh? How about mixing that in with parties with alcohol, sleepovers at friends’ houses, and days like today where he is off with friends to the nearest city to watch a big cricket game.

As parents of a young person with diabetes, you find yourself doing hitherto unimaginable things like teaching your child to drink alcohol. We have had a few awkward and funny afternoons and evenings handing over beers to our son and watching the impact on his levels. It seems to have worked and he has gone out had quite a few beers, stayed away all night and come home in one piece with levels which were pretty good the next day.

Do you know what’s so brilliant about all of this? He is having fun! He is not focused on his diabetes but is accepting that it’s an unavoidable part of his life and he is dealing with it!

Thinking back to when he was diagnosed over four years ago, I never thought this time would come , yet here we are! I look back to those feelings when he was first diagnosed. I wrote this poem when I could not imagine the future we are in now! I feel incredibly lucky that we have been supported by an amazing Diabetes Educator who has encouraged my son to do whatever he wanted to do and who, from the very beginning, suggested we fit diabetes into our lives and not the other way around. There will be challenges ahead but it is an an incredible feeling to start 2018 feeling like there is hope for a full and happy future!

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! 

Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

Diabetes Blog Week- Day 1

Diabetes and The Unexpected – Monday 5/15

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I’m going to tackle the latter part of today’s challenge! 

Context: My son was diagnosed with Type 1 diabetes three and a half years ago.

GOOD THINGS DIABETES HAS BROUGHT TO OUR LIVES

AN ABILITY TO DO MATHS– I really do suck at maths and my poor wee brain turns itself inside out doing calculations for new recipes. I find now that I can add carbs up in my head and divide them by the number of people eating the food with greater speed and accuracy. It does take my total concentration. If my husband comes across me in the kitchen with a furrowed brow and strange facial expression, he knows to leave me alone. I’m either counting carbs or doing my pelvic floor exercises! If I can ever master doing both things at the same time, I will let you know! 

A KICK ASS ATTITUDE – I used to worry about what people thought of me. Now? Not so much. I have taken a school principal and his deputy to task when my child was unsafe under their care. I know how to cut to the chase with an issue and I am afraid of no one when it comes to my children being safe. 

ACTING SKILLS – there are days when I am exhausted either from worrying about all the things mums stress over or have concerns about the added whammy of having a child with Type 1 diabetes thrown in. I work full time as a teacher and I do totally love my job but there are days when I’m exhausted and would rather stay home and binge on Netflix. I can’t so I slap on my makeup, and go to work. 

I know that my son has his own version of this. After a rocky night, he still gets up and goes to school and does his work. He must feel pretty crappy at times but he never lets it show. Sometimes we have a quiet hug before he goes out as I need him to know that I get it on some level. I may not have diabetes but I am his mum.

MULTITASKING I’ve become really good at faking total engagement in meetings and in class whilst being able to imagine where my child is, and what his blood glucose levels might be. You know what? I must be bloody good as no one has ever noticed and when there are less stressful moments, I can race through work related tasks with a speed and focus that I did not used to possess. My nodding at meetings is in all the correct places and, after over twenty years in this job, my classes don’t actually require my 100% attention.

My son is an expert mulitasker who can be heavily involved in a rugby game yet still read my frantic facial expressions from the side line that he needs to check his BGLs. He can quickly come across and do a check at half time without losing his concentration on the game. That is impressive.

GREATER COMPASSION-  It reminds me of when I was pregnant and I would get teary over ads on TV. I am hopeless when I see a family experiencing a difficult situation. It doesn’t need to be diabetes related. I could cry for the kids in my care who have extra challenges in their lives and I carry their stories with me and change how I deal with them and their families as a result.

This (Aretha Franklin I Say A Little Prayer)is my anthem as I’m looking in the mirror in the morning, getting my ‘game face’ on for the day ahead. 

I can see this in my three boys. They get that life can be tough for people for so many reasons and they are not quick to judge. This will be a great skill for them to carry forward into their adult lives. 

AN ABILITY TO FEEL LIKE YOU ARE FAILING REPEATEDLY YET NOT GIVE UP- I’m Scottish and I take my inspiration from Robert the Bruce ( here is the story) watching the spider in the cave. We chase the ever elusive perfect blood sugar levels. We very rarely get them in range for a whole day at the moment and yet every day I see my son get up and get on with life without ever complaining. 

We all try so hard to be perfect parents and diabetes has taught me that failure is ok! I cannot always meet the standards set, there is nothing to be learnt from this failure most of the time as diabetes does not acknowledge effort put in and yet we keep going and most of the time life is good. This, I think, is the most important of all.

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!

I am an insulin pen

I am no ordinary pen.
My story is written in the veins of those whom I save every day.
There is no ink in me.
I push insulin through my nib into the flesh of those who need me.
Hands grasp me, dial up the dose required and plunge me into their flesh,
Multiple times of every day of every week of every year.
My needle pierces the skin, bringing a sting of pain.
Some consider me inferior, as technology could easily replace me
Yet
I am loved by many for my lack of intrusiveness and for the comfort of knowing that I will never let them down.
I have hidden strength in my little vial and never forget this.
Treat me with disdain and I can take you down.
Love me, handle me with care and attention.
Because of me, people lead lives both ordinary and amazing.
This is the gift I give.
The rest is up to you.