King of the Road

Our eldest two boys are only 17 months apart in age. It’s almost like having twins. 

We live in New South Wales, Australia. When you learn to drive here, you firstly do a computer based theory test to make sure you have the knowledge of the rules of the road. You can do this as soon as you turn 16, get your Learner licence then you have the minimum of a year in which to do 120 hours of driving practise. Once you have turned 17 and have done  your 120 hours, you can sit your practical test in a car with an examiner and then you gain your P plates which allow you to drive alone (with some other restrictions on speed, passengers and alcohol consumption thrown in to keep you safe). Got that?

Our eldest got his Ps last year and has now gained the nickname Über. After surviving 120 hours in the car with him, he owes his loving parents a few lifts here and there.

Onto number two child, with the added complication of Type 1 Diabetes thrown in. 

Number 1: 

Getting your L’s – a letter is required from an endocrinologist or paediatrician. A sight test is needed here and, from what I can understand, this letter basically lets the authorities know that the person has controlled diabetes. From what I’ve understood, this letter is required to be submitted every year. How and where I have yet to figure out.

Number 2:

Working out the rules around driving with Type 1 diabetes. You would assume that the Roads and Maritime Services who issue the Learner’s licence would be able to tell you that. Wrong! After googling myself into a zombie like state #OzDoc came to the rescue. Serendipity is a wonderful thing as the topic on the Tuesday night #OzDoc twitter chat was driving. I was given advice on how to help my son with hypos and driving, the documents we needed to read and so much more. How amazing is it to be in rural NSW where you don’t really know anyone else with Type 1 diabetes and be able to quickly get the advice you need to help your child.

Number 3: 

Navigating the numbers. The first couple of hours of practise went well. My boy is a natural and unlike the first few outings with his big brother, I did not swear once!  It’s been so lovely to spend one on one time with him driving around our beautiful area, whilst chatting. When it came to the third time going out, he checked his BGL and was 4.8. What to have? 

There was no advice quickly available online about how to get that level up to 5.0 without pushing it too high in the other direction. A fast acting hypo treatment seems to go against all we had ever done, given that this 4.8 was in the lovely normal range. I puzzled over this then asked on twitter what to do. Several lovely tweets with suggestions came back and from those, my son’s preference is to have a freddo frog. Good choice!

The next day was accompanied with an unexpected hypo just as we were about to go out. Things suddenly felt more complicated. Have a hypo treatment, wait till the level comes up to 5.0 then wait half an hour and check again. This took 45 minutes and the window of opportunity to drive had closed.

Number 4:

Finding a sympathetic driving instructor. Actually, this turned out not to be such a hard thing. We had used this instructor for our eldest child and knew he was a good man. I sent him a text to book in our second son and let him know he had Type 1 diabetes. I sent him the link to the NDSS document ‘Above 5 to Drive’. 

A short while later, I received this text: ‘Had a read of the link and thanks for the info . I will take care of him and tell him to always say if there’s a problem. And if he ever needs to cancel, even if I’m at the house, it’s all good with me and tell him never worry 😊’. Wow, wow and wow! Imagine a world where this was the normal reaction to Type 1 Diabetes.

Ok, 4 hours done, 116 to go!

What I’d love to write to my son’s school

Hey

Yes it’s me again. The one whose eye you very carefully avoided when you saw me at school the other day. For your information, I didn’t even want to talk to you. I was there with another of my children. It was their moment. I respect that and so should you.

I know you saw me. I’m aware that you consider me to be a pain in the arse and quite frankly, I don’t give a flying duck!

Since my child was diagnosed with Type 1 diabetes three years ago, I’ve become an advocate for his rights. I have to because you don’t really look after his needs and I know for a fact that there are several other students at his school with Type 1 diabetes. I wonder if you treat them with the same disdain? 

I have never once been rude when I’ve approached you. I am direct as I’ve given up on the subtlety I previously favoured (see here)

Is it really that much to ask that the diabetes educator be allowed to come and talk to all the staff once a year? Can’t you schedule it in to one of the staff meetings? I find it incredibly rude that every single year I have to make multiple requests, with increasing forcefulness, before it is finally done. 

Last year, I ran out of energy and guess what? No visit from the educator! 

I have three children at your school and because of your lack of ability to deal with training, I have to be the one to send my child’s emergency care plan to teachers when there is an excursion. This doesn’t bother me but, as a consequence, I feel judged and I often don’t contact the school when there are issues with my other children, as I don’t want to be seen as ‘one of those parents’. That bothers me at times! 

I would not send them to this school if I didn’t believe it offered a good education and that most of the teachers really do care about the students, so come on! Step up and shoulder your responsibility in this!

In one of our conversations, you told me my child needed to speak up when he was in trouble with his diabetes. This phrase haunts me in rare dark moments and tells me you do not understand what happens to someone who, for whatever reason, and often through no fault of their own, has blood sugar levels which are very low or very high. I wonder what needs to happen before you realise? That is the question that rolls around my brain when I send off my child to your care.

It has, however, felt really wonderful to get this off my chest!

Yours,

Resting bitch face

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! 

Veni, Vidi, Lusi, Vici 


Veni, Vidi, Lusi , Vici- I came, I saw, I played, I won!

 If my son had a Latin motto it would be this! Julius Caesar take a back seat! 

There is none so fierce as a 16 year old boy determined to play cricket like a pro.  A flight was taken to another time zone.  Night time lows and day time highs were navigated with unintrusive help. Carbs were counted pretty successfully. The results of each game (read ‘battle’) were dissected on the side of the field.  Whilst cricketing tactics were openly discussed, my boy waged a silent campaign.  

He fought off heat, then cold. He made intricate decisions based on activity levels. The war, however, was not won by type 1 diabetes. My boy owned his diabetes and he dominated it!   He took a big step towards independence. The team performed well in a tough pool but the actual results of the games don’t really matter as the real victor is safely tucked up in his bed, back home with us, smiling to himself and reliving  moments of glory on the field.

Diabetes Queen  Mothers 

Diabetes Queen Mother

When your child is diagnosed with Type 1 diabetes, it is the loneliest feeling in the world! For me, it was the first time that I couldn’t wave my magic maternal wand and make something nasty and unwanted disappear. Other than health professionals (who can be amazing) there is generally no one to tell you what to do or help you help your child. Whilst it is your child who has diabetes and not you, you are their primary caregiver and as such are reponsible for them. This can feel all consuming.

A year after my son’s diagnosis, I discovered the diabetes online community. I read lots of blogs and found that I wanted to write my own. I am really clear when I write that it’s not me who has diabetes. I do not reveal my son’s name and I don’t post photos of him on my blog or on twitter. That is my choice, as I know my boy and he is private about his diabetes. 

It is hard as a parent to know what your online profile should be. Clearly, most of us do not actually have diabetes but it is such a big part of our lives whether our children are five or fifteen. I often feel hypocritical for even writing about diabetes as I don’t have it, but it can dominate my life and I do enjoy the connections I have made with people online, especially some other mums.

As 2017 comes to close,  I have seen the amazing phenomenon that is Constance Hall (read about it here). I follow what Constance does on Facebook. It’s so fantastic how she tells it like it is and connects with women across the globe with her total honesty and humour. I don’t need to agree with everything she does and says.  Her success comes from talking about how life really is. She hides nothing and people love this about her. Women being there for each other is not new but using social media to do this is a relatively new phenomenon.

With this in mind, I would like to pay homage and respect to the Diabetes Queen Mothers out there. There are many ways to be a Diabetes Queen Mother. None are wrong. I realise that some mums do things differently from me: some share much more than I would, others are more focused on research, and my own way of coping is to try to be realistically optimistic and focus on hope. 

We are all different yet we are all connected by Type 1 Diabetes and together we are stronger. It’s not our task to critique or question each other. We are not digital natives and we can be clumsy and awkward.  We don’t have solutions or cures but we have real, lived experiences of helping our children grow into strong, independent young adults. We need not always agree but we are Diabetes Queen Mothers.

Who are my Diabetes Queen Mothers? 

(In no particular order)

carbcountingkids.com

@carolynboardman (on Twitter)

@cstevens338 (On twitter)

Bigfootchildhavediabetes.com

Brightoneagle.wordpress.com

T1dandgf.wordpress.com

Acornishmum.com

Racheljgood.wordpress.com

@deepost30 (on twitter)

WaltzingTheDragon.ca

actuallymummy.co.uk

I’ve focused purely on Diabetes Queen Mothers in this blog. That is not to take away from the Diabetes Queens and Kings out there who inspire and teach us every day in many, many ways.


The Boy and the Egg Cross a Continent 


(I love this bust. I call it ‘Mother of Boys’. I saw it in a Château in the Loire Valley and immediately identified with her facial expression.)

Anyway, back to this blog!

Off he goes, cricket bat in one hand, Egg in the other! That’s my boy and, in my eyes, he is a champion before he has even left.

Being selected for the school’s First 11 cricket team was an honour, playing in the local school comp was fun and then came the cherry on the cake: the opportunity to join the team in a competition on the other side of Australia! 

First of all, what is it about bloody cricket and blood glucose levels? I sit on the side lines on a Saturday : a true martyr, looking just like the picture above. I’ve given up even trying to pick which child is mine, let alone try to understand the rules. Then comes the post match analysis of the game.  I smile, and adopt a Madonna-esque ( not pointy bra Madonna) facial expression and try to nod in the right places. Following this, we try to figure out the randomness of the BGLs (this time potty mouth Madonna can make an appearance) and we are stumped. (Hey, look, a cricket metaphor!).

Last week, wearing a CGM (funded by the local diabetes clinic) was a seemingly fantastic solution to working out what was going on. Great idea until there was an allergic reaction to the film keeping the CGM in place. Cue much frantic itching and the appearance of a nasty rash. A new CGM was put on after the weekend and was able to be kept on until the end of the week. The poor boy did have another allergic reaction but had kept quiet about it and soldiered on. The information gleaned from the wearing of the CGM has meant that the amount of insulin used around games can now be tailored much more precisely.

Challenge number one, was making sure the teacher leading the group had an awareness of Type 1 diabetes and was trained to use glucagon. This took some organising from our Diabetes Educator. She said her session with the teacher was fantastic and that the teacher was floored by what my son has to do every day. It is wonderful that he sees him as a ‘normal’ boy and he is, but there is so much work goes on, especially around sport, to make that happen. Now the teacher gets it, I can be confident in him being a good back up for my boy.

The next challenge was to find a family who would billet my boy. A lovely lady has put her hand up. Her sibling has Type 1 diabetes and her son is in the host school’s team . She has volunteered to do the 3am wake up so BGLs can be checked after a big day of cricket in the sun, presumably backed up with swims and back yard cricket. She is getting in all the hypo snacks needed and has sent texts checking we are all good to go. I am unbelievably grateful to this family. This had been my biggest worry as my boy sleeps through night time hypos. I am pretty tough and don’t cry often but I bawled my eyes out with sheer relief after I spoke to this lady.

After the school and accommodation were sorted, we needed to go through the action plan. We rocked up Friday afternoon to the local diabetes clinic. This date coincided with my son’s three year ‘diaversary’. On the way to the appointment, I really wanted my son to reflect on how amazing, fantastic and all round bloody wonderful he has been. As we drove, we chatted about all that had happened in those three years and I let him know in very clear terms how proud his dad and I are of him. 

My boy knows what he needs to do. He can carb count like a pro. He has a great knowledge of how to manage his diabetes. My hope is that, with all this knowledge and a good back up team, he can focus on having fun and playing some good cricket.

So here we are. Tomorrow is preparation day. Cricket gear needs to be pristine. Good clothes for going out folded. Full school winter uniform including blazer hung up ready to wear travelling. Then lastly we will go through the diabetes kit. A lesson on how to use the Frio packs, triple checking that there is enough gear to last a week and then we will wave him off in the wee small hours of Tuesday.

Letters of hope

I need to give thanks and be grateful. I need to repay some of the kindness shown to us by the local community. After thinking long and hard about how to do this, I decided to make up care packs for the families of children newly diagnosed with Type 1 diabetes in our area. These will be given to the diabetes clinic for them to distribute. They average around fifteen diagnosis a year in this country hospital so it is manageable.

I’ve got:

A lovely calico tote bag – useful for carrying all the bits and pieces, such as log books, and spare meters which are needed at clinic and endo appointments.

A hardback notebook- useful as a journal, to write down carb counts for recipes or list the many questions needing to be asked in the early days or even to throw at walls.

A decent pen- who doesn’t like a nice pen?

A symbol of hope or love- just to let people know they are not alone .

Letters of Hope – totally the most important inclusion. To be printed out on nice paper and put in a fancy envelope. Our beautiful diabetes educator is going to ask some people she knows. Messages sent  via twitter to many of the amazing people I have come in contact with through #OzDoc and other people who have blogs about their own or their child’s diabetes, have resulted in quite a few offers to contribute Letters of Hope. I feel so lucky to have met these people and I know their contributions will really make a difference to newly diagnosed children and their families.

Writing my own Letter of Hope was such a positive and affirming experience for me and if it helps just one person then I will be happy. Here is my letter.

…………………………………………………………………………………………………………..

Hi!

How are you? Silly question, isn’t it? Your child has been diagnosed with Type 1 Diabetes. Do you feel exhausted? Are you wondering what your life and the life of your child and family will be like from here on in?

I understand! Not many people will get what you are feeling right now but I have a bit of an idea as my child was also diagnosed with Type 1 Diabetes. I sat in hospital almost three years ago and could not get my head around my son’s diagnosis of Type 1 diabetes.

It does get better and you will survive, please know that! You need to be so strong now and that is hard. Your child will no doubt be looking at you for cues on how to react. Please try to keep it together in front of them. I shed quite a few tears in the Parents’ Room but I really tried my best to keep my act together in front of my son. Right now you are all in this together, learning about insulin, carb counting and trying to get your heads around your new reality. You will learn lots and you will get there!

I have a really vivid memory of being told to fit diabetes into our lives and not the other way around. I have kept this in my head now for almost three years. When my son asks me if he can do something, I ask myself if I would have let him do it if he didn’t have diabetes.

I can honestly say there is nothing he hasn’t done because of his diabetes. He plays multiple sports, he now has a part-time job, he has had sleepovers at friends’ houses, and he has gone on school camps. I would never have believed any of this was possible but it has been and he has enjoyed every single thing he has done.

How have we done this? Since diagnosis, we have worked with the diabetes educator to figure out how to make it happen. It hasn’t always been smooth sailing with the school but I have learned not to give up. I am polite but insistent and just keep asking until it happens. Be kind to other people who don’t get it but when it comes to the rights of your child, the school has a duty of care. The real world, after school, will come soon enough but in the meantime, you need to pull up your big girl or boy pants and stand up for your child. Lots of teachers are fantastic and open to learning. It’s not all bad!

As we have progressed through the years, my son has taken on more and more of the responsibility of his diabetes but I am there in the background, checking how things are going and asking a few, sometimes annoying, questions. He is a teenager; he does make mistakes but I never blame him as I don’t want to lose his trust. We talk about numbers and try to figure out why they might sometimes be too high or too low then we try to fix it. When I first see him after school, despite an almost overwhelming desire to find out what his levels were all day, I ask him about all the other stuff in his life. We keep his diabetes kit on the kitchen bench so I will look at his meter later or ask him about his levels as we get ready for dinner.

Language is weirdly important to me. To me it’s clear that my son ‘has’ diabetes, he isn’t a diabetic. He doesn’t ‘suffer’ from diabetes, he thrives despite it! I try to talking about ‘checking’ his blood rather than ‘testing’ it. It’s not a pass or fail! These are small things but they give me perspective and take the blaming away.

Accepting imperfection is a big part of the deal too! You can have the same set of circumstances two days in a row and get two entirely different results. Don’t torture yourself about that. Life should go on, don’t stop doing things (unless of course the blood glucose levels are really high or low) but do get help from your diabetes team. We have had crazy days with bumpy BGLs but nothing has gone wrong: school is still attended, homework is still done (yeh, it’s a bummer in my house, a chronic condition still doesn’t get you out of doing homework), friends come still around, sport is still played and still no hospital admissions for diabetes.

In the midst of the madness, take care of yourself. You are still an important person in your own right and, as much as it can seem the opposite, you are not defined by your child’s diabetes. I go for walks. It’s free, can be done at any time and as much as I have to force myself, I always feel better afterwards. Initially I had to force myself to go and have fun. I thought I’d never have more than one glass of wine ever again. How could I leave my child to go and do something for myself? Eventually, I did go out, I may even have had two glasses of bubbles and guess what? My son survived and barely noticed my absence.

Not everyone will understand what you are going through. Even your closest family and friends will not get it at times. That feels really hard as your child’s diabetes is dominating your every thought at the start. Over time, I probably did lose a few friends but the friendships I have now are stronger and it was probably better that I didn’t head butt the friend who kept saying, ‘Well, at least it’s not cancer!’. Safe to say, we no longer hang out as much! Saying that, I didn’t know much at all about diabetes before my son’s diagnosis so I try to keep that in mind when people say silly things and downplay the reality of diabetes.

Diabetes is an invisible disease and your child looks horribly normal and so do you! You will become like an elite synchronised swimmer: all smiles above the water but a frenzy of activity below. That’s the gig! Eventually the smile will be real. You will all have fun, you will most likely become a nicer, kinder, more understanding person and so will the rest of your family. In the mean time just keep paddling your legs!

Know too that as you go through what you are doing, there is a whole community of people, young and old, out there who are doing the same things. You might never meet us but we are out there, fighting the good fight, staying strong for ourselves and our kids and turning these heroes into amazing adults with fantastic futures ahead of them!

……………………………………………………………………………………………………….

If you would like to send me you Letter of Hope, please leave a message and I will get back to you.