Oath of allegiance to my teen with type 1 diabetes

I do solemnly swear
That I will support you
In all your endeavours,
In following your dreams,
In reaching your potential.

I will be in the background
Like a safety net,
Ready to catch you whenever you need me.

There may be times when you find it all too much
So I may need to stick my nose in where it’s unwanted.
Please know that if I do this, it’s because I love you.

Diplomacy will be my middle name.
I will not confront you when you struggle but will gently ask where I can help.

Just say the word though and I will swing into action, fighting your corner.
You know I can.

You have the right to tell me to back off,
To do things your way.
Please be gentle with me though as it is so very hard to let you go.

You are amazing.
You possess the skills, resilience and empathy
To take you wherever you want to go.
Be brave.
Live your life.
Be all you can be.

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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 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!

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!

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!

Acronyms for parents of kids with Type 1 Diabetes Part 1

We can be funky too! There are so many funny acronyms out there. They are constantly evolving and a reflection of the world around us. This got me thinking about how parents of young people with Type 1 Diabetes should have their own set of acronyms.

So many acronyms start with FO (Fear of). So where do we start?

FOS-Fear of Sleepovers. There is no fear of missing out (FOMO) in this house as my son does everything but I do worry when he has sleepovers. He is bright and sensible but he is also a teenager and I have learnt that I cannot always rely on others to be there for him. All this said, he has had lots of sleepovers and lives to tell the tale. In order to deal with my FOS, I have become a …

HOS – Host of Sleepovers. Yes, don’t you just love it after a week of work! Teenagers raiding your stash of chips and biscuits, and messing up your house. But, your child is home and happy so it’s all worthwhile!

FOBNO- Fear of Big Nights Out. Moving on from sleepovers, my boy is now hitting the party scene with all its fun and temptations. Why shouldn’t he? We have run through scenarios on what to do in different situations. We have driven many kilometres at godawful hours of the night, dodged kangaroos on country roads, been a total embarrassment in unattractive night attire, so we can pick him up and bring him home to sleep in his own bed.

Now onto Love!

LAHOS -Love and Hatred of Sport. That familiar feeling of wanting your child to be sporty and active but knowing with certainly that the start of a new sporting season heralds crazy blood glucose levels, extra checks done during the night while insulin levels are adjusted and the need to be ultra organised when packing for a sporting event.

LODE- Love of Diabetes Educator. We are so lucky and as my boy grows so does his appreciation of what this amazing lady does for us. She is our guardian angel, has seen us at our best and worst but never judges or makes us feel anything but special.

WDD- Worry Deep Down. We learn to live in the present, enjoying what we are doing yet supporting the gnawing presence of WDD. It’s an amazing skill I have observed in parents of kids with particular health issues. We are the ultimate multi taskers. We can LOL and WDD at the same time.

The most common acronyms are universal when related to diabetes. Constantly living with NFI not knowing WTF is coming next!

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!

Pizza, positivity and perfect peace.

I haven’t written for a while. Why not? 

Life is busy and life is GOOD!

When I write this blog, I keep the personal details about my son out of it and focus on things from my perspective. He doesn’t even know about this blog and I know he would find it all a bit icky! It’s not that it’s a big secret but I really don’t think he’d be very interested. One day I might show him this blog and I would hate for him to be embarrassed or feel that I’d revealed too much about him. So, I keep personal details vague which can make it difficult to write.

With this in mind, what can I tell you about why we are going through this positive and peaceful period?

My boy has Type 1 diabetes but he has and is so many other things at the moment and my heart is bursting with pride! I love it when  his diabetes doesn’t follow me around like a cloud and is most definitely not the first thing I think of when I wake up in the morning! Long may this last! 

So how is my boy doing?

He is going quite well at school. A bit of a cheeky chappy at times but I kinda like that, as it will be a character strength that serves him well going into the future. He was encouraged to apply for leadership positions for his senior year and is currently doing that. I don’t even care if he gets a role but his teachers saw something in him that demonstrated leadership.  I am so grateful for that! He was blown away to hear this praise from a couple of amazing male teachers who are top role models for young boys. None of them really know the work my son puts in, the 121 decisions he has to make about his diabetes every day (I’ve never forgotten reading that statistic), and they certainly don’t see him as a victim. My son is very private about his diabetes so only some very special teachers have had a glimpse into this other part of his world.

He has a girlfriend and I’m trying not to explode with happiness. She is all I’d dreamt that his first serious girlfriend would be. They are clearly besotted with each other and they are having fun. They laugh, giggle and talk so much. She is wanting to learn about his diabetes and asks lots of questions. I’m trying not to have a total mum crush on her as, in the House of Testosterone, some female company is just lovely.

He has a part-time job which he likes. He has moved from one fast food place to another one just across the road. This one is so much better. His diabetes was spoken about at the interview and was totally not an issue. It’s actually a permanent part time job which means he has rights! He will even get sick pay and holiday leave. Can you believe it?

We have emerged from quite a tough year! The first few months of the year were very scary for me, as his mum. I could see he was struggling with this whole diabetes gig and just wanted it to be gone. We are so lucky to have an amazing CDE and paediatrician who helped us through this.

My own health was up and down recently. I’d been experiencing some stomach issues which are now on their way to being fixed. I hadn’t realised how awful I’d been feeling until I started to feel better. Currently I’m being quite selfish and can often be found binging on a Netflix series or curled up with a book. I’m focusing on my health and currently thinking about fermenting vegetables and making bone broth to help my stomach heal. Whilst this does not fill me with joy, to balance it up, I’m enjoying coming up with new toppings for the pizzas which go in our newly installed pizza oven. 

So there you have it! I’m quietly celebrating this calm after the storm.