Sitting with the sadness

Sometimes you just have to sit with the sadness.

My son has had type 1 diabetes for over three years. It has become part of what we do: an annoying interloper whose demands have to be satisfied at every turn but mainly we muddle along quite nicely.

Recently though, I have felt a real sadness settle over me. I’d been ignoring it. Life is busy so it’s not hard to keep on moving. Three kids, work, we all know some version of the routine.

Holidays are here now and it cannot be outrun any more. Tears have been a secret companion in the last couple of weeks and often for no apparent reason. So over the last few of days, I’ve not run away from how I feel. I’ve cried my tears and sat with my sadness and through that, I seem to have figured out why I feel like I do.

The baby that I had, that I fed, whose nappies I changed and for whom I had dreams and hopes, is turning into a man. I need to grieve that this adulthood which he is entering is not quite the one I had imagined. I know it’s not all doom and gloom and my mission every single day is to make sure that diabetes does not dominate. I didn’t, however,  think about how it must be horribly normal to go through the feelings of grief that a parent has at diagnosis at later times too.

Recently lots of things have been changing. It’s all the normal stuff : school exams, learning to drive, moving over to winter sports, going out more with friends, girls, work. My son is amazing and does not hold back on anything, which is exactly how a teenager should be. My job in the background is to figure out  how all this can be done and often this can involve emails to our fabulous educator (to adjust insulin doses)  or to the not so fabulous school ( to query diabetes provisions for senior exams or try to organise for the DE to talk to staff). I try to be discreet and not in my son’s face. I know he thinks about his diabetes too so I don’t want to add my concerns to any he may have. 

As his big brother is heading towards the end of his high school education, we are helping him plan what he may want to do. A deposit for schoolies (a horrid Aussie tradition, in my opinion) has been paid from his savings and university open days will be visited in the upcoming months. This is what has forced my brain to consider the options for my second son, the one with Type 1 diabetes, who will have all these decisions to make next year. 

I could vomit at the thought of him taking off to schoolies for a week. The temptations, in all their shapes and forms, are huge there. Then what about uni?  We do have a local uni but why shouldn’t he go off and experience the fun and independence of undergrad life: freshers week, juggling a part time job with uni, sleeping in shared accommodation, etc. My mind has been racing ahead in a way that I have until now managed not to do. Taking on one thing at a time has got us through these last three years so I need to stop worrying and live life now. The future will come soon enough.

Now that I know why I am feeling like this, the tears have stopped. I’ve gone back to doing what I did when my son was first diagnosed. 

I’ve been walking and thanks to a new family subscription to Apple Music, I have the funkiest playlist which I play at top volume as I pound the streets. These cool sounds and the incessant beat of the tunes of my youth, with a few modern numbers added in by my kids to keep me up to date, do not allow my brain to worry. 

The Smiling Mind app on my phone has been used every day and the breathing exercises and focus on mindfulness are really helping me regroup.

Last night, I was feeling a bit low after a successful but tiring camping trip. Connecting with others who understand about diabetes felt like the right thing to do and a pleasant hour was spent with the amazing people on #OzDoc on Twitter (always there on Tuesday evening from 8.30pm, please do come and join in). I’m so glad I did. I needed to be amongst adults who had survived those years and who, despite issues they may have, are living good lives. 

I’ve sat with my sadness and I’ve looked it straight in the eye and I’m fine.

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

Head butting concrete



Background
: 15 year old boy with Type 1 diabetes. Great kid with two settings: sloth and clumsy giraffe on speed. There is no way to predict which setting is in operation at any moment.

Motivation: Two Blood Glucose Monitors which both, within a space of a week, show signs of not being reliable. This is not wonderful when your son has Type 1 diabetes. A call to the helpline will surely be able to fix this? 

Setting the scene: Your lunch break is 45 minutes. Mobile reception at your work is dodgy to say the least so calls have to be made from a phone in the middle of a busy staffroom. There is a tiny surface, about the area of a phone directory, where you can balance a notebook or iPad if you need info for your call.

Reality: 35 minutes spent in a queue. You do not have lunch as you didn’t think to bring your sandwich to the phone. You did not fit in a quick loo stop before you got on the phone and you are teaching for the full afternoon. A miracle occurs: you make it to the front of the queue and your call is answered.

Main characters 

1) aforementioned high school teacher, starving hungry, in need of a wee and slightly on edge in case the Blood Glucose Meter her son took to school stops working.

2) extremely patronising lady who has clearly done a training module on how to talk with empathy to harassed customers.

Dialogue:(assume we have run through five minutes of privacy statement, details of child, various other details which we go through each and every time we call, serial numbers on the back of each meter in the tiniest font  have been supplied, as you were smart enough in the middle of your son’s hypo that morning to remember to take a picture of the back of his meter and you even managed to simultaneously hold down two buttons on the meter on the tiniest ledge imaginable so as to be able to give the details of the error codes.)

Teacher:  ‘Yay, finally a human! You are a human right? Great! My son has two of your meters and both appear to be playing up. On one meter, he repeatedly gets a message that the drop of blood is not big enough when it very clearly is whereas the other emits a strange squeaking noise when the cassette rotates.’

Lady – ‘Let me run through the method you and your son are using. No, please don’t stop me even if you think you know what you are doing, it’s amazing how often people are doing the wrong thing and your son has gone through a large number of meters which really does make me wonder.’

Slightly narky teacher- ‘We have been through this so many times that I could do your speech for you and I now only have 5 minutes left so can you please just put through the order for two new meters and I promise I will send back the old meters. Yes, my son is a teenage boy and so may not be the most precise and careful creature but he does care about his diabetes and having correct results. No, putting his meter in a little tub would not be an option as he carries it in his pocket when he goes from class to class. Yes, I will suggest that he treats his meters with great care and does not launch his school bag across rooms or sit on his bag if his meter is in it. Now about those new meters, are you going to send them?

Accusatory Lady: ‘Have you been following the correct procedure for inserting new cassettes and also do you follow our cleaning instructions from the back page of the manual ? Let me talk you through exactly what that is and you can follow on the meter you have with you. 

Defensive teacher: ‘For the love of God, can I have two new meters or not? I now have one minute left, I have nothing left to say to you. Are you understanding how stressful this is? I would love it if my son changed to another type of meter as I think there are better models than yours for him but he wants this type as he is comfortable with how it works. He has diabetes, not me, so I am respecting his wishes but, tell me now, are you going to send me two replacement meters as I need to go?’

Placatory Lady in a voice dripping with syrup : ‘I totally understand what you are saying and I will be sending you out two new meters with the understanding that you follow the correct procedure when changing the cassette and you promise me that you will frequently utilise the cleaning method using the cotton bud which we discussed earlier.’

Sarcastic teacher: ‘Thank you so much for your help, I look forward to receiving the meters and will ensure all protocols in relation to cassette changing and cleaning will be followed with the utmost care and attention. There’s the bell. I have to go!’

If there had been a concrete wall in front of me at that moment, I swear I would have found great comfort in repeatedly head butting it until I drew blood but instead, I picked up my bag and headed to my class, engaging my pelvic floor to the max and ignoring my rumbling stomach. I keep reliving that conversation and wondering if I should have done it differently.

Oh no, oh no, it’s off to school we go!


Summer holidays are fantastic! Even if Type 1 diabetes does not behave itself, there is the time and the energy to deal with it. We live in Australia and this beach has been our home for many days in the last few weeks. How lucky is that?

Summer holidays go fast here! By the time you have Christmas and New Year celebrations, then put away the tree, it’s almost time to start getting organised for the new school year. I am most definitely not complaining about the holidays I get as a teacher. I’m comparing them to the British summer holidays when I had seven glorious uninterrupted weeks. Mind you, summer weather often passed us by!

Now we come to getting ready for school to go back. We don’t mention it much, but shoes have been purchased, pens and pencils are neatly arranged in a drawer, exercise books are piled up ready to be ignored for another year in favour of Google docs, the diabetes supply drawer is a testimony to organisation. So, what’s the worry?

During the holidays my sons are so independent. They’ll head off to the cricket nets, cycle out to a water hole in a local river and swing off ropes, meet up out the back of our house with mates and plan their day or hang about in the man cave (which will soon become a sanctuary of academia, where boys will sit and quietly study. I can but dream!).

Now, I have to hand the care of my (gorgeous, big, sometimes grumpy, often funny, 15 year old) son to a new group of teachers. This scares the hell out of me. My boy is tall, fit, sporty, as reasonably motivated as you can expect from a fifteen year old boy and looks perfectly, horribly normal. Type 1 diabetes is such an invisible disease and misconceptions around its causes and treatments abound. Last year my boy had some scary moments at school which were not all handled well but thankfully the year ended with an education session from our Diabetes Educator. Again, what’s the worry?

I’m a high school teacher. I get it! There is so much to take in. There is information to remember on every child so I’m just hoping that his teachers will remember the information they were given on my boy. I want his name to ring bells in their head and for them to take the time to read the information on him and to know what to do if he needs them.

Someone in authority  at his school told me last year that my son needs to take more responsibility and let teachers know when things aren’t going well. In other words, he needs to be an adult , not a fifteen year old boy. He needs to be able to communicate through low or high blood glucose levels and make things easier for everyone else.

There seems to be an assumption amongst some people that when a child gets a chronic disease, such as Type1 diabetes, they are simultaneously gifted with clarity of thought, maturity and the ability to communicate clearly in all, but especially in potentially dangerous, situations. Come on! What kind of teenagers were these people? I let this person know that they needed to realign their perceptions with the real world which is inhabited by real, live, less than perfect human beings. That is exactly why we have a management plan.

I love teaching teenagers. One thing I know, with absolute certainty, is that they are generally not finely tuned creatures! As the mum of three boys, I know this to be especially true of the male species whose poor brains develop at a slower rate than their female counterparts. The management of diabetes is huge, takes a high level of organisational skills and is constant. My boy does a pretty damn good job most of the time. Perfection is not a prerequisite in this house. I know that one day my son will leave school and won’t have the same safety net around him but while he is at school, I have expectations from those around him.

I wrote this poem last year and it still holds very true. My boy isn’t on a pump. His choice is to use insulin pens. That is his choice and my role is to support him. His little surf branded bag is his pancreas: his insulin pens, his blood glucose meter, his needles, his juice poppers.

We will enjoy the last few days of our freedom.