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!

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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!

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!

 

Disco Inferno (Otherwise known as a night out for parents of a child with T1 diabetes)

    

   

  
 
I wrote this after we had a great Christmas night out with all the people from my work. We still had a good time but I didn’t totally relax once that phone buzzed. My boy was only looking for some reassurance and I realised this the next day. 

I refound my mojo that night, even just for a brief while, and that was fun! It was all I needed to remind me that I love that man of mine too! He’s the Kel to my Kath! Best Christmas present ever!

My friend Maddie!

   

 

  
A little piece of France in NSW, Australia. Miam! I found a little homewares shop in Tours and bought the tray which helps give these cakes their familiar shape. This recipe came from the internet today (please double check the carb count) and it worked out around the magic 15g of carbs per portion which makes it easier for my son with T1 diabetes to calculate the carbs.

The lemony smell is just lovely and I must confess, I couldn’t wait for the 2o minutes before putting them in the oven. On the other hand, I don’t think eating them within an hour will be an issue in a house with 5 people!

Jet lag is gone and the house is a mess but we’ll share a little piece of France tonight for dessert!

I’m sure you could use patty cake tins for this recipe if you feel like trying them.

Flourless Chocolate Cake

Ah the wicked web we weave…..

My boys love this chocolate cake. I love it too! It’s a relatively healthy, high protein cake full of chick peas and never once in all the times I’ve served it up to friends, has anyone guessed that chick peas are the secret ingredient. I only give this recipe away if promises are made never to reveal this! You can pretty it up with a dusting of icing sugar but there’s not really any need. I love that it’s high protein! 

    

Bring it on!

 

I am tough! I’m the mother of a child with Type 1 diabetes. Nothing else that can come my way will bring me down!

I am strong! I walk to my child’s room every day and wait to see the rise and fall of his chest! Fixing issues at work comes easy. There are solutions to all these problems!

I am in control! I drive home from work whilst simultaneously singing loudly to seventies disco music and calculating the carb value of the meal I’m about to prepare!

I am adaptable! Anticipating the impact every little thing my child does on his blood glucose levels and getting it wrong frequently, teaches me this skill!

Don’t mess with me! You stuff up your role in caring for my child when I have tried to help you, I will take you down!