And then there’s this.

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I’ve found it really hard to write this post today. I nearly didn’t write one. I am by nature, a positive person, who generally doesn’t dwell on emotional issues.

I want to be the poster mum! I want to say that I’ve got my shit together and my life with a child with Type 1 diabetes, whilst challenging, is rewarding. The reality is, it depends when you ask. Sometimes I don’t feel like I have the right to be sad. I don’t have Type 1 Diabetes. It’s my big, beautiful 16 year old, middle son who does. But, I am his mum. I love him with every fibre of my being and this is the one thing since he was born that I cannot fix.

About a month ago, it felt like I was spiralling into sadness. You can read about that here if you feel like it. I recognise now that it’s part of this gig as a parent of a child with diabetes. We celebrate the amazing victories our children have but sometimes we need to sit with the sadness and recognise that it is hard and the future we dreamt for our children may not be exactly how we had imagined it to be.

A big part of it, for me, is down to the numbers. They dominate my life and can be a barometer for how I feel. As the meter is checked daily, I feel my mood change. A line of beautiful, in range numbers and I could pop a bottle of champagne.

The reality is, at the moment, that it is a rare occurrence. Between trying to avoid hypos at school,  growth spurts, the impact of sport on BGLs, remembering to rotate injection sites, levels spiking due to school exams, imperfect carb counting (not my judgment-  does my boy really have to weigh every banana? Can’t he just see that it’s small and he knows how to work it out accordingly? The degree of precision requested is not going to happen), hurried calculation of insulin doses when it’s lunch and recess at school and my boy is in a hurry to get going, eat and go do whatever teenage boys do.

We have a great team supporting him. Our CDE is lovely, totally gets how hard this is, never judges, is the best advocate for my son, and listens to what he says. We have access to a dietitian, see a fab paediatrician and endocrinologist.

Have our big endo clinic next week and I hate it. There, I’ve said it! I know the hba1c is going to be higher. I know we have done all we can to avoid this. I know there is a chance that they will want to take my big, beautiful boy into hospital to help work out what is going on and I’m crying as I write this at the thought of how he might react to that.

It’s Thursday morning in Australia. Monday and Tuesday, my son’s levels were pretty in range, even though he had a sore throat and runny nose. Yay! I felt like super mum as I danced around the kitchen making dinner. Tuesday night, the same. How good is this? Wednesday night, big zig zags today! I leave it for a few hours then ask my son how school was. Talk about the normal stuff, I wait a bit then ask him how his levels were. He looks at me and says, “Not so good”.  Have a quick chat, the same one we have on days like these and we still don’t know why the zig or the zag. And there it is folks, the mood changer.

Diabetes does not define my son, his diabetes does not define me. Yet………

The big, shiny sunshine in the midst of all this is the Diabetes Online Community.  This great family of people all across the world who just get it! I am so immensely grateful to those who read this, who nod their heads, who feel compassion, who empathise with what my little family in a small town in Australia is living through.

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!

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

 

The boy and the egg go on an overnight school trip

Dear Sir,

My boy is the Boy with the egg.You might remember him from last year. He made the final team and now you are taking him on an overnight excursion. I know! It is amazing and he played so well. He carried that egg in his pocket and he never even cracked the shell! He had the best fun, was covered in bruises and grinning from ear to ear when he came home.

I’ve emailed you twice in the last week to ask that you undertake the Egg Preservation Training (EPT).  It’s a quick course to teach you how to help my boy look after his egg in an emergency. Our educator has very kindly offered to come to you and do the training. We need a reply to our emails please.

I am fully aware that my boy looks totally normal and you would never guess he has to carry that egg. Last year he had a really scary time on an excursion when a teacher refused to help him carry his egg. It nearly smashed as he didn’t follow my son’s Action Plan. You can read about that here. I’ve attached the most recent copy of the Action Plan to this email.

I also need to ask you to wake my boy at 3am. The egg is under a great deal of pressure after a full day of sport and you need to wake my boy and ask him to check it for cracks. This is something we do regularly so it won’t worry him. I know this is a big expectation of you after a busy day. We would be very grateful if you let us know that you will accept this responsibility.

My boy will have a great time on this trip. I don’t doubt that for a moment. You too will have fantastic trip with a top team but I know will you will feel more confident in yourself if you undertake the EPT. 

Many thanks,

Mumoftype1.

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Dear Educator

I finally heard back from the teacher. The trip has been cancelled. Not enough of the team turned up for training sessions. He congratulated my boy for turning up to every session and expressed his sadness at having to cancel the excursion.

All your amazing work to help protect the egg, all the planning  for keeping it safe and it’s a no go!

I feel like I’m ready for a peace keeping job in the United Nations with my carefully scripted emails to the teacher- understanding their difficult job but gently putting pressure on him to attend training and do a night check. All for nothing!

This is our job- egg protection squad!

Thanks as ever for your support of my boy!

Mumoftype1

Two years

  Two years since I took my son to the doctor.

Two years since I saw the nurse and doctor exchange that look that told me everything.

Two years since I watched my brave boy do his first blood test.

Two years since he took the insulin pen, looked me in the eye and felt the needle pierce his skin.

Two years since we started to learn about carbs.

Two years since we slept regularly through the night.

Two years since we made last minute decisions to do things.

Two years since we met the educator who is our guardian angel.

In those two years:

An amazing young man has emerged.

He knows that you can’t always win but you can learn and move on.

He has grabbed life by the balls and twisted as hard as he can.

Type 1 diabetes does not define him.

The Appointment 

  

It’s appointment time again. Twice a year we see the endocrinologist. This time the paediatrician will be there too. My boy hates these appointments. Diabetes does not figure large in our conversations at home. 

Here, his diabetes is front and centre of stage. I try to make it fun. But fun visit to the endocrinologist is an oxymoron! Not the endocrinologist’s fault:  he is unfailingly positive and encouraging, as is the paediatrician.We visit a nearby sports shop and my son inevitably comes out with a purchase clutched in his hands and he stares into the bag as we wait for his turn.  Afterwards, afternoon tea is whatever is requested in a nearby cafe.

Sitting waiting for our turn with the paediatrician and the endocrinologist, I look around the waiting room. Three families. 

One really young child rolls around the carpet, giggling and laughing. Her parents look on.

Another mum and son sit and stare at their phones. Nothing unusual there. Emails to check, games to be played.

We sit together: mum, dad and son. We talk to the various people who pass by: the dietitian checks in to see if we have any questions, our diabetes educator asks how things are going and we have a chat about my recent trip to France.

I look around the room. We are all in our little worlds and yet we are united by Type 1 diabetes. I cannot help but remember a statistic that I read earlier in the year which said that people with Type 1 diabetes (or in some cases their carers) make an average of 121 decisions around managing diabetes every day. In this small room about 363 decisions are being made daily. 

Chatting to the receptionist, he tells me that this week, twelve young people with diabetes are being seen each day for five working days, in this country town. The number of decisions being made blows my mind! 

I see the mum and son being introduced to the receptionist and some of the other people who work here. It’s their first visit. I look more closely at the mum’s face and it makes me want to cry. She smiles at everyone and chats but I can see the tiredness and the strain. Perhaps I’m just projecting how I felt back when my son was diagnosed. I wrote this poem then. I’d love to go over and chat and tell her it will get better. I want to give her the biggest hug, buy her a coffee or pour her a large glass of wine. 

Watching the younger child hiding under a chair, I wonder about just how you manage a diagnosis of a child so young. I feel a huge amount of admiration for these parents. Again, I’m comparing, as my boy was diagnosed around his thirteenth birthday.

Type 1 diabetes is such an invisible disease. Someone walking into this room would never be able to make a guess as to what we all had in common – but in this room alone an average of 363 really important decisions are made every single day, of every week, of every year. We need a cure!

PS the photo has nothing to do with the story but it’s of the gardens in Versailles and it makes me feel calm and happy whenever I look at it.

Dear teacher

  
Parent teacher interviews last night. Great to hear that these teacher’s know my boy. I know that our beloved educator is going to do a talk to the staff soon. Last week we had a near miss and the lack of awareness could have come at a huge cost to my son’s health. 

It has all been a reminder to us of how vulnerable we are when we send our children off. We hope that the teachers remember who our children are and what they need to do for them: it’s usually nothing but when things go wrong we need them to have a minimum amount of knowledge. I thought I’d been proactive but that was not the case.

I know this job. I’m a teacher too. This makes it even harder as I know what a tough gig teaching can be. I feel conflicted but making sure my boy is safe is my priority.

I wrote this poem at the start of this year when my son returned to school after the holidays. All my nieces and nephews in the Northern Hemisphere head back to school soon as we edge closer to our Australian summer. This is what I’d really like to say to the teachers.