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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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.

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.