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!

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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!

 

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! 

That boy and the egg is growing up.

The boy and the egg
Is growing up
He now carries his precious egg to a part time job.
He didn’t tell of his egg’s existence on his application as he doesn’t feel it is a disability.
Time has moved on.
He hasn’t felt brave enough to show anyone his egg.
I worry that he finds it a burden and is embarrassed by its presence.
I fear he may not find compassion and understanding when he is brave enough to show it to others.
What if he is rejected?
Not telling them about the egg is equally terrifying.
It’s real and it exists and if it cracks one day,
People need to know.
Yet and still,
It hasn’t cracked.
It isn’t broken.
He continues to live the length and breadth of his life.
And me?
I need him to be safe but
I want him to be his own man,
To find his own way.

What not to do! The Opposite of Tricks and Tips- Diabetes Blog Week

Tips and Tricks – Friday 5/20 Let’s round out the week by sharing our best diabetes tips and diabetes tricks.  

When I saw what we were to blog about today my heart sank! I make mistakes all the time so from my now quite considerable experience, I can certainly pass on some advice to mothers of children with diabetes: what not to do!

Night time blood testing: 

These have all been tried and tested on my poor child. Do not:

  1. Try to use your phone as a torch by holding it between your teeth whilst simultaneously doing a finger prick. The angle at which you have to hold your head in order to shine the torch on the sleeping child’s hand means that your head is so far back that the hand is no longer in your field of vision.
  2. Use a camping torch on your head. Yes, it certainly does free up your hands but the look of terror on your child’s face when they wake due to the intense light in their eyes, is one you will not forget in a hurry.
  3. Choose the wrong child when entering a dark tent in the middle of the night to do a blood glucose check. Nuff said there!
  4. Take offence if your sleepy child chooses their middle finger for their blood test and even if they stick it up in a way that in other circumstances would get them in trouble , let it go! They have to get their revenge sometimes!
  5. Forget to wear your glasses. Leave them next to your bed so that you put them on as soon as your alarm goes off. If you need to make corrections to high levels, 5% can look very like 10% when you are flying blind.

Accessories. You will not need :

  1. A small handbag! Even if it’s cute, in a sale and made from Italian leather , you will not be able to use it and it will mock you from the depths of your wardrobe.
  2. Jelly beans in your bag when you are premenstrual! You know they are for your child’s possible hypos but your desire to eat them will be so strong that you will not be able to resist. You will feel guilty for the rest of the day. Stick an extra popper in your bag instead!
  3. Cheap make up! Invest in some good quality makeup. You know you deserve it! It covers up the bags under your eyes from the night time checks and stops people asking if you’re feeling sick! I’ve had to tell my mother in law to stop asking me if I feel sick when she pops into the house on a Sunday morning. This is what I look like without makeup , do not try to rub away invisible stains under my eyes (true story, I swear!). This is what your son wakes up to every morning so deal with it woman! ( I do love her, just not when she licks her finger and attacks my face to remove stains that are just under eye shadows from lack of sleep!)

Cooking and food. You must never:

  1. Forget the maths you learnt at school. You forgotten it already? You poor sod! Relearn it pronto!
  2. Lose your calm whilst making calculations under extreme pressure- it reminds me of my brother’s paramedic training where he was forced to drive at high speed whilst answering complex medical questions. The more likely scenario for us will be a starving child and buffet type meal. You may develop a muscle twitch in your eye when computing the carbs. Be careful who you look at at this point as you may receive some unwanted advances from the strange little man at the end of the buffet who thinks you are winking at him! Read this poem about being a carb counting queen.
  3. Try to pretend a cauliflower sauce is carbonara. If you are going to tell lies about food, it must taste nice! Chocolate mousse made from avocado, maple syrup, cream and cacao is a rare exception!
  4. Give up! Trying to learn to count carbs when starting from scratch is bloody hard. Healthy, home made food is a great goal to have but dialling a pizza now and then makes life feel normal!

You! Do not:

  1. Forget about yourself. In the six months following diagnosis, I did not go out for fun. What if something happened to my child when I wasn’t there? Nothing bad happened and I was there so, slowly but surely, I let go. I do go out now and I’ve learnt to trust my son and those around him. My son also needs to see that him having diabetes does not prevent me from living my life. If I want him to live life to the full, don’t I need to do the same? Put your fears in a padded cell in your brain and deal with them when you feel up to it!
  2. Drink four glasses of prosecco in quick succession then fall asleep in the corner thus missing out on the fun night you’d been looking forward to for weeks! 

    I had such fun putting this list together, reliving some crazy moments from the last two years. If I look at the lists, and not the ‘do nots’ that come before them, these are all things I have done. We have survived and even had a few laughs along the way! Does anyone else have a list like this?