Growing Diabetes Balls

I hope you don’t think me indelicate, but I need to talk to you about my balls! I may be a middle aged mammy but I own a beautiful pair of diabetes balls. They started to form when my son was diagnosed with Type 1 Diabetes. I didn’t know what was happening! I had strange outbursts and surges of rage. Then, as they do, my balls dropped. Now I keep them tucked away in my handbag, nestled in beside the jelly beans and the glucagon.

They only make an appearance when needed. I know my son finds it rather embarrassing when I need to get my lady balls out, and I wish with all my heart and soul that I never needed to see them again. Making sure my son is safe, especially in the context of school, has been a large part of my raison d’être for almost five years.

Keeping him safe has meant standing up to his school, making myself unpopular at times. It has meant taking chances to gently educate those around me when opportunities arise. It has meant quiet conversations with my son’s friends to ensure they are aware of what to do if he needs them. This has taken balls as it would have been so easy to say and do nothing.

If only we lived in a world where people understood better: where diabetes, of any description, was not the butt of jokes, where schools understood that having diabetes does not preclude a student from being a normal teenager, where you didn’t need to be really brave and stand up for yourself or your child.

Now I come to my rather delicate issue. I need to help my boy grow his own pair of diabetes balls. He will finish up with school and the children’s diabetes clinic at the end of the year. He will then be working for a year, and living at home before he moves off to university the year after. That’s the current plan!

I know I would say this but he is an amazing kid. He was diagnosed a few days before his 13th birthday, almost five years ago. This was just at the time where he was gaining independence: going out for the day with mates, taking off on his bike with a few dollars in his pocket for lunch, having sleepovers. He took that independence and ran with it, continuing to do so for almost five years. He is always busy doing something: multiple sports are played, he drives, has a part time job, is in his final year of school and in the last year, he parties and drinks beer!

How do you teach your child not to be embarrassed, especially as a young adult dealing with news situations?

How do you help them to find their voice ? To avoid getting into dangerous situations by being brave enough to speak up?

This is the challenge for him and for me.

Talking of balls, just so reading this was worth your while, I though I’d share some more balls, this time in the form of a recipe. These are a favourite in our house.

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The Boy and the Egg pull some moves!

So here we have it. Remember The boy and the Egg? I wrote this not long after my son was diagnosed. He spent his 13th birthday in hospital a couple of days after his diagnosis. How times have changed! And how they’ve stayed the same!

So here we are over four years post diagnosis. How is my boy and how is that Egg? I’m so pleased to report that both are intact! Initially the worry was how my boy could play sport, navigate school, hang out with friends and still manage to take care of the Egg.

These days, the Egg goes on dates. Through what I can only imagine are passionate embraces, the Egg has not been smashed. The Egg has also been there when a heart was broken. Not my boy’s, but an amazing young woman who was his first serious girlfriend! He had sat with the Egg in his hands as he tried to think over how to be diplomatic and delicate in ending this relationship. The Egg lost a fierce protector when the relationship ended but having someone to share the Egg with is not enough of a reason in itself to keep a relationship going. (Note to self, as the mother of three boys, do not fall in love with your son’s girlfriends!)

The Egg is a frequent attender of parties where my boy can hold a beer in one hand and the Egg in the other and can apparently pull some dance moves at the same time. How amazing and terrifying is that? In order for this to happen, we had to have some Egg and Alcohol sessions at home. We gradually increased the number of beers my boy had over the course of a few weeks, making sure he held on to the Egg and never left it where it could be smashed. We checked frequently throughout the night that he hadn’t rolled on it and smashed it and so far so good! We have had to be totally realistic about alcohol. We are living in the real world and facing the challenges in a way that reflects the reality of our boy’s life.

Driving with the Egg on the dashboard presents a few challenges. Keeping an eye on it and the road can be hard, especially when you are a learner and you have a parent there with you, trying to explain what to do. My boy has recently moved from an automatic to a manual car and those gear changes certainly increase the adrenalin and those kangaroo jumps can be scary and are accompanied by pleas from my boy that I stop swearing.

Working in a fast food outlet with an Egg in his pocket has been interesting. Finding a part time job that is permanent , rather than casual, has meant that employers have had to acknowledge the existence of the Egg. They have been offered the chance to be trained in Egg Preservation but it hasn’t been needed so far. The main thing is that my boy can take that Egg out of his pocket if he needs to as it isn’t a secret. He can take time out on a shift and make sure it’s alright. He gets holiday pay and sick pay which is an incredible thing at this age and offsets the lower hourly rate.

We live in the country and many of my boy’s friends live in other towns and villages which are not necessarily close by. This means he has days and nights away and as he has expanded his social circle it means the we do not necessarily know the families of these friends. Trust and honesty have never been as crucial. We have a little kit bag which serves as a nest for the Egg. When he goes off, my boy packs it full of everything he may possibly need for a couple of days and promises to text us regularly. He knows, if he has a big day or evening, that he’ll need to wake up during the night and check on the Egg.

Our boy has realised this summer that having the tiresome responsibility of the Egg does not preclude him from all normal activities. He has taken on a more active role in looking after the Egg. We are still there as the Egg Support Squad in the background but as he gets ready to finish his last year at school and move on to a big exciting future, I feel like he has the world at his feet and a good grip on that Egg!

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.

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.

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.  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.

 

Message Monday- My dreams and hopes.

Why the French title? Sometimes French words just sound better!

My hopes and dreams for my son who has Type 1 diabetes are so important and keeping positive about every aspect of his future keeps me motivated. This is the same for all three of my sons but, in the face of so much negativity around diabetes, it becomes all the more pertinent when you want to keep the image of a bright, positive future alive for a teenager with Type 1 diabetes. 

This time last year I stumbled across diabetes blog week. I found blogs by other parents and suddenly I didn’t feel as alone. From this grew the idea that perhaps I could write a blog too. I spend so much time thinking (but not talking) about my son’s diabetes, so why not write about it?

One of the first posts was a poem I’d written. I am not a poet. I’m a mum of three boys, a wife and a full time high school teacher. Walking was my sanity in the early days after my son was diagnosed. I’d throw my self out of bed and into my walking gear and pound the streets. My head was trying to make sense of what was happening and I found myself constantly reliving the day of his diagnosis. 

I’m pretty together in my working life and didn’t find myself often in a position of helplessness yet here I was,  feeling raw and exposed. I wrote this poem and it felt just right to share it with others who understood the feelings it expressed. The connections I’ve made through sharing this blog have given me the enthusiasm and desire to continue, albeit more sporadically. Making connections with other parents online helps so much when there is a absence of connections in my ‘real’ world.

I love the diabetes online community the most when I feel connected or when it gives me messages of hope. I know the reality, the potential future complications for my son, but I try to help him deal with his reality with realism and, together, we face each challenge as it comes. I love to read about those who have lived their lives with diabetes and thrived in the process. I don’t necessarily mean by climbing mountains or swimming across vast oceans. Things like finding love in the midst of diabetes chaos, working at jobs which are fulfilling, travelling and experiencing the world would be the pinnacle of success in my book and those are the blogs which fuel my hopes and dreams.

Now two and a half years after diagnosis, I know my son and our family have come a long way but I read this poem and I’m right back in that day. It must be around a year since I wrote my first blog post and it feels right to connect with these feelings again.

 I lost a layer of skin

I lost a layer of skin
As we entered the hospital on the day of the diagnosis.

I didn’t feel it fall off. It certainly didn’t hurt.
It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.

I wish I had noticed it leaving.
I imagine it floating gently over the roofs of nearby houses,
Carrying with it the half formed dreams I alone held for my child,
leaving behind only rawness.
Over days, weeks and months a strange new layer has grown in its place.
It’s a bizarre contradiction – tough yet sensitive.

Watching the drops of intense ruby blood makes it want to shred itself
Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
Seeing the somber eyes of a child learning to cope leaves a hollowness.
Dragging a weary body through night times of wakefulness leaves it feeling prickly.

It’s certainly more careworn than the layer it replaces but it’s strong and it needs to be.
It bears the brave scars of battles: some internal and silent, others of epic proportions.

Hiding the multitude of maternal fears which largely remain unshared have hardened the carapace.
It has to be tough for the times when it’s all too much for a child who just wants the old normal.

The old normal isn’t coming back.
I like to imagine that I’ll find that layer of skin again someday and fashion a purpose for it in this new existence, for there is hope.

Move over Miss Marple

In the words of Taggart,

“There’s been a murder”

But there is no body.

A pancreas has been killed

And it’s inside my son.

My dodgy gene pool looks like the prime suspect

With weird and wonderful auto immune diseases abounding

On both sides of my family tree.

No happy valley here.

Just a predisposition

And the elusive lightening strike

That leaves him with needles and insulin pens: the wire in his blood.

I spend my days as a silent witness,

Looking for the ‘green around the gills’ tinge of an impending hypo

Trying to work out the reason for sudden high levels.

I snuffle about, metaphorical magnifying glass in hand,

Forensically examining the carb count of a recent meal,

Querying the impact of an activity or lack thereof,

Constantly learning new tricks.

There is no right or wrong in this game.

He is above suspicion.

Sleepless nights feeling like I am waking the dead: a teenage boy in deep slumber.

Blame is never attributed for the weird and wonderful numbers which

Randomly appear on that small screen.

No offence is taken by this amazing child but

No convictions will ever be made for the death of a pancreas.
Edit – how many detective shows can you find reference to?