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.

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.

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.

…………………………………………………………………..

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

The Big Snorty Snore

  It was dark as I walked towards his bedroom door. I stood in the doorway and heard the biggest, snortiest snore ever. Just one, then the gentle sound of regular breathing. I smiled, walked to the kitchen and put the kettle on.

That big, snorty snore tells me all is well with my boy. He had a really weird day yesterday with yo-yo levels so I worried about last night. My husband had done a 3am test. 

Only in a house with a Type 1 child would the middle of the night conversation be like this:
“D’you do the BGL?”

“Yip.”

“Good?”

“Yip.”

“What?”

“5.6”

“Love ya!”

“You too”

Who said romance was dead?

That big, snorty, teenage snore told me all was well, my boy was fine. Another day begins! I hope for a better day than yesterday!

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.

 

The Boy and the Egg Part 2

   

Last week, I wrote about how I picture my son’s Type 1 Diabetes as an egg.
(https://mumoftype1.wordpress.com/2015/07/22/the-boy-and-the-egg/)

My boy’s egg nearly smashed today and I’ve never been so scared in my life.

There’s no point in rehashing the smaller details but those in charge of a school excursion did not follow protocols: management plans were not followed, phone calls were not made, all of which resulted in one sick little man. My heart is sore for him tonight!

He is home, he is fine and the mother hen in me has ‘sorted out’ (think female Billy Connolly in a seething rage) the school, and it should never happen again. Education will be put in place very soon, people will learn from this. I have to see that as a positive.

Sport! Go figure!

  Sport is important in the House of Testosterone. 1 man, 3 boys :  3 boys playing rugby union, dad coaching and  the littlest man and dad playing football in the winter. Summer sees cricket come in (beam me up now!), Touch football (several times a week for all) and swimming for the littlest man.  

Many loads of stinky washing, and a whole new language which I still struggle with. The offside rule is officially beyond me. The cricket dads stopped trying to explain the rules after the fourth week. The kids were all so far away that I couldn’t tell which child was mine and I start to lose the will to live at the start of the third hour of a cricket game.  The availability of a glass of wine at Friday night rugby is admittedly an attractive prospect. 

Throwing Type 1 diabetes into the mix has been a challenge which my son has met head on. He does amazingly well but there is no predicting those Blood Glucose Levels after sport. It’s like the lotto, you just don’t know what number’s going to come next. Adrenalin, short bursts of effort versus long sustained effort, hormones, cold, heat. Who knows what number is going to appear on that little screen? 

At the moment the dance classes for sport at school are having the exact same effect as the intense Friday night rugby games. Who could have anticipated that? Is it the prospect of a spot of public dancing, the horrid idea of having to ask a girl to dance or has my boy found his groove? 

We are so lucky to have a top team backing us up! The Diabetes Educator is constantly in touch, trying to help us figure out the conundrum. Sport is fantastic and I hope all my sons play these sports into adulthood but from the sidelines I can see it’s certainly not an easy option when trying to keep your BGLs in range if you have Type 1 diabetes.