It don’t mean a thing if you ain’t got that swing!

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We spent a fun morning on Saturday. After collecting a very sleepy boy from schoolies (you can read about that here if you like), we headed to a golf store with the intention of buying a set of golf clubs for my boy’s 18th birthday present. He didn’t know the purpose of visiting this shop. He had barely slept and was keen to get home to his bed. It was just wonderful to see the delight in his face as we told him about this gift. It was hysterical then to watch this tired big boy being put through his paces by the man in the shop. He needed to know what kind of golfer our boy was so set him up against the indoor mini driving range and got him to hit a few balls.

TheN the fun really began! Who knew that golf was so complicated?

Firstly, he had to imagine he was sitting back on a bar stool – not too much of a stretch given that he’d just spent a week doing that very thing!

Secondly, he was to demonstrate bending forward slightly from the waist. This had to be done whilst the shoulders were kept back. All good so far although concentration was pushed to the max.

Thirdly, hand position. The grip has to be in the correct spot. Angling the dominant hand round slightly, whilst feeling counter intuitive apparently corrected his tendency to send balls off to the right.

Fourthly, the swing! Head down, shoulders down, use the leverage of those lanky long arms to gain some advantage. Let the swing follow around in a natural arc.

There was nothing natural about anything by this stage but the man from the shop patiently helped him whack one ball after another. Some were on target, others made us all thankful that there was a side net. Adjustments were made to his stance and posture and reminders gently given as to what needed to be done to hit the target.

The need to coordinate so many things at the same time in order to hit the targeted zone was so hard and unachievable most of the time. There always seemed to be one element going rogue! The bum was not on the bar stool, the hand alignment was incorrect or rushed, the head was not down and focused, and that swing!

The need for 100% concentration at all times on several elements made it seem like an impossible feat. We were told that the golf clubs we were purchasing were of the best quality but that the key to improvement was practice.

I’m sure you can see where I’m going with this. As hilarious as it was to watch our boy sweat a week’s worth of beer out the top of his head whilst maintaining some modicum of dignity and occasionally hit the target, I could not help but compare this to his life with Type 1 Diabetes.

If anyone who reads this is a golfer, I apologise for any errors in the golfing advice. I had tears of laughter rolling down my face which interfered with my understanding of a sport which already baffles me!

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Freedom! Move over William Wallace!

So here we have it! Schoolies is finally here. For the uninitiated, schoolies is a very Aussie tradition during which school leavers hit party mode hard for a week. Some head to Bali or Fiji, others stay closer to home, opting for places like Byron Bay or the Gold Coast.

My boys think it’s the best thing ever. Living in rural Australia, they have never lived the city life so are happy to stay on these shores. Big brother went last year and survived. This year came the turn of my middle boy who has Type 1 diabetes. Last year I worried about drugs, alcohol, and coward punches.

This year, to my worry list (which I try to contain to a padded cell in my head, visiting only occasionally to indulge in a huge silent scream), I have added 7 nights managing type 1 diabetes alone. Did I even think about stopping my son from going? Not ever, not even for a second.

He has survived 6 years of high school, has submitted hundreds of assessment tasks, sat countless exams and navigated relationships with teachers and peers. For five of those years his constant companion has been Type 1 diabetes. He so deserves to celebrate and the style in which he does that is his choice and is totally funded by him, from the sweat of his brow, after working solidly over the last couple of years in a fast food restaurant.

I read about people living ‘their best life’. It’s a daft expression as, for most of us, our choices are pretty limited. For my boy, he is totally living the life he wants and that’s what it’s all about.

I dreamt of having children who played musical instruments, were fluent in foreign languages and who loved sitting around watch ABC docos and chatting about the novels they were currently reading. Instead, I wasted thousands of dollars on piano lessons, never got past nursery rhymes in French and Italian, and have boys who do not share my passion for reading. They are however very aware of how lucky we are to live where we do and are grateful to enjoy the freedoms of the society in which we live. They will all be good men. Of this I am sure.

I have gradually realigned my lofty cultural expectations and have grown to accept the weird and wonderful ways of my three boys. The toilet seat at their end of the house is usually up and the first thing I do when unexpected visitors arrive is quickly go and clean it. I know that wrestling me is their version of a hug. I have learnt many life hacks on quick clean ups and coverups!

So here we are now, almost at the end of schoolies. We exchange daily texts, have only spoken once, and Diabetes rarely rates a mention. He is happy and knows what he needs to do. He is wearing a Libre, has his Frio pouches for his insulin and his MedAngel thermometer to make sure it doesn’t get too hot. He has a discreet little running belt under his shirt which keeps Libre reader, his insulin pen, needles and jellybeans just where he needs them. The last five years have lead us to this point. My boy may not be exploring cultural sites of significance in exotic locations and is more likely to be busting out some dance moves in a night club, beer in hand but he is doing exactly what he wants to do, and I could not be more proud.

Meanwhile, back home, I am chilling out! I thought I’d be a wreck this week but I am not. I have slept like a baby, albeit a baby with her iPhone ten centimetres from her head, and I have gone about my day to day life feeling confident in my boy. I have been pottering in the kitchen, working my way through my fave new cookbook Ottolenghi’s Simple, finally looking at what I want to do in my free time. Next week, I’m going to go and sing in a choir. I can’t read music and can just about carry a tune but I love to sing. This choir is only women and they sing 80’s and 90’s music. I am really hoping it’s fun.

The future is here, the moment we have been waiting for. School is finished, a University place has been accepted and deferred and we are embracing our freedom in our own ways. I’m still totally here for my boy and whatever happens, I know Diabetes will throw him many a curved ball, I have his back. This he knows and, comfortable in this knowledge, we can both enjoy our FREEDOM! (Make sure you say that in the same manner as Mel Gibson in the movie Braveheart -go on!)

My Diabetes Family – Growing up with the #doc

My Diabetes Family

I keep seeing this #mydiabetesfamily on Twitter and on other Social Media and it’s got me thinking about who my diabetes family is. Considering that I do not have diabetes, why am I even asking myself?

My middle son has had Type 1 Diabetes for almost five years. He celebrated his 13th birthday a couple of days after he was diagnosed, becoming a teenager whilst in hospital (cue the gift of a denim patchwork quilt, made by a local sewing group, which is still over the end of his bed).

My son’s diabetes family is small. It’s us! His mum, his dad and his two brothers. He lives with diabetes every day but it’s not part of his online presence. That’s all the family he currently wants or needs. He sees his medical team: an endocrinologist and a diabetes educator and they are his medical diabetes family. He is busy living his life, does what he needs to do every day and I think he does an amazing job.

My need for a diabetes family has been much greater than his. I also absolutely believe that the diabetes family I have around me has helped me to be a better mum to him.

I’ve always kept my online presence as anonymous as possible. I don’t ever post my son’s name and never post photos that would identify us. Strange isn’t it that here I am then, with a fully functioning pancreas and what I believe is the most amazing diabetes family?

I feel like I’ve passed through all the stages of life with my online diabetes family. I stumbled onto the scene like an awkward teenager having written poetry and feeling very needy and in need of reassurance. I am so lucky that my clumsy and sometimes misinformed attempts to connect with people did bring me into contact with the #doc and more locally #ozdoc.

I found some great people to mentor me, read some amazing blogs and survived my “diabetes teenage years” as my son turned into a young man. I am so absolutely grateful for the patience that people showed towards me, for the advice, for the positive comments my blog received and most of all for the connections across the world that stopped me feeling so alone.

The next stage, was where I came into my ‘adult diabetes years’, becoming more of an advocate for my son and also for issues affecting the diabetes community. I got more involved, campaigning locally for CGMs for all those with diabetes and having some good conversations with our local MP. I also felt like I needed to pay back into this community and into the search for a cure or for research into ways to live with diabetes. Every year I’ve held a fundraiser for JDRF and with a great bunch of women. We put the ‘fun’ in fundraiser every year. This event allows me to reach out to around 50 top females and quietly educate and raise awareness while we drink bubbles and have a great afternoon together.

I’m fading into the background now, I’m trying to embrace my ‘middle aged diabetes spread’. I don’t write so much any more. My boy is almost a man. My job will never be done with any of my boys but it feels like I need to step back and let him go, well, as best as I can. The maternal tug will always be there. Some of what we have gone through in the last year has been heart achingly horrid and other parts have been amazingly positive but these are not my stories to tell. That’s my boy’s narrative and should he choose to share it one day, that’s his choice.

The contacts I’d made on #ozdoc and #doc and the invaluable advice received in private messages gave me the strength and courage to act on his behalf. Without this, I hate to think of how we would have survived. The very survival of these hard times, allowed me then to privately share some of the wonderful moments with people and make even deeper connections with some. My thanks are heartfelt and deep to those who were there for us.

There are a couple of mums, one in particular, who I’ve met on Twitter and we have been there with each other every step of the way. Chatting online through the night and sharing jokes and hopes and well as frustrations and doubts has meant that I can function fully and happily in my day to day life. We have plans to meet up one day and that would be just fantastic!

What I didn’t realise until recently is that I have become part of the ‘diabetes family’ that other people have. Over the last year, some people have made contact and let me know that they enjoy reading what I write. This was unexpected and such a beautiful surprise! I was backing away from Twitter and blogging as I’m not really sure what my role is going forward but I’ve come to realise that, in small ways, I can help others and perhaps be there in the background for them just as others were for me. Not quite a wise elder but more of a crazy Scottish sweary mammy whose heart is filled with love for this big worldwide community that’s been thrown together by diabetes. I salute you all!

Control

Control! Wow, how this word has taken on such a different meaning and has such a different effect on me since my son was diagnosed, almost five years ago, with Type 1 diabetes.

Control – I used to think it was the supreme power I exercised not to eat the last slice of cake.

Control – the amazing ability my boy has had to manage his emotions when judged by those who do not understand him and the effort he makes each and every day to live a life with Type 1 diabetes.

Control – the special power I now use to keep calm when people judge my son.

Control – something that, as an outsider, I can see is very difficult to have in relation to life and living with Type 1 diabetes.

Control – a word not used by people who understand the complexity of life with a chronic condition.

Control – The thing I did not recently exercise of my eyeballs when my son was treated with respect and dignity by health care professionals who were working with him. The tears momentarily flowed in gratitude then we all smiled.

Control – the huge capacity my son has to put up with me checking in on him and asking how he is doing in all things in life but especially in relation to his diabetes. The supreme effort he puts in not to roll his eyes as I gradually try to ask those questions less and let him take over. It is so very, very hard to do this after five years of being there, every step of the way.

So, I say, Feck calm and WTF is control anyway?

Diabetes Billboard

Diabetes is a billboard in my life.

Sometimes, it is on the side of the road and I see it there, reminding me of things that need to be done to help my son who has Type 1 Diabetes. As I drive to work its presence in the distance will remind me that we need to book an eye appointment for him, or that he is about to run out of needles for his insulin pens.

Some days, it’s a bit closer to the side of the road, when I’m seeing how many things my son needs to do and I know some days this is hard for him. Those days I’m very aware of it as I work out how to best help my boy do the things he wants to do.

Other times, like recently, it felt like my nose was pressed right up against that billboard hiding everything else from my view, stopping me from moving forward. I don’t have diabetes but after five years of watching my son live with it, it can loom large in my world.

When your child is growing and changing, doing their best to live a full, active life with a chronic condition, so many judgements are made. Some lack an understanding that there is a person in the middle of this condition.

Loneliness and total despair only begin to describe the feeling of having your nose pressed up against that diabetes billboard. I can only imagine there are many others out there who have felt the same. What choices do you have when it feels like there is no way forward? The only choice is to look back over your shoulder.

I was so busy looking ahead, trying to figure out how to get through this horrid time that I hadn’t thought to do this until crisis point was reached.

When I looked over my shoulder, I discovered a small unexpected group of people out there, following at a distance. I found comfort and knowledge in their open arms. I just needed to ask, and through their wisdom, love and support, calm returned and new way forward was found.

I am so thankful to this small crew of amazing people. They know who they are and the support they gave to my son and to me. I will never forget this and next time I will know to look over my shoulder. You should try it, you will hopefully get the best surprise.

His hands

At birth his little premature hands were so fine and fragile with nails only part formed. There was a strength in the grip as I held him in my arms and looked at his tiny self.

He was a hand holder, always. Sidling up to me and grabbing my hand as an unsure toddler. Tickling my hand in a secret code when we both knew we were stuck somewhere but had to stay. Squeezing my hand tight to try to make me yelp in pain was followed by peels of laughter.

Watching those hands learning to master first cutlery, then a pencil and waiting for the elusive primary school ‘pen licence’ which was never awarded due to a stubborn personality streak which would not see the necessity of writing neatly.

Sport then occupied those hands: dribbling a basket ball, throwing a cricket ball, catching a rugby ball. Always amazing control, and coordination.

Then aged 13 those hands took on another role. Sharp needles pierced fingertips; a finger sometimes needing to be milked like a little udder to produce a glistening drop of blood which would then direct the course of the next few hours with insulin and carb calculations following on.

Those hands seized the blood glucose meter on the second day, jumping as the spring released the needle, eyes wide in fright as a plump drop of blood sprang out onto his finger. From then on, other than when asleep, the meter was his and his alone.

My hands have danced with his hands in various strange nocturnal waltzes in all kinds of crazy locations: from tents to long distance planes. Sometimes those hands do not want to come out, especially when tucked under a pillow in the depth of a cold winter’s night. An unsightly arm wrestling match can ensue but it is never the best of three as the meter must win, a number must be had and then sleep can be resumed.

I know these hands intimately. I know which fingers he prefers to use for checks. I know his cheeky smile as he sticks up his middle finger at 3am, half asleep. I know the part of his fingers that the needle hurts least.

Over time, the tips of certain fingers have grown hard and dots mark their surface. They are men’s hands now. Where once his tiny hand nestled in mine, both of my hands can cradle one of his.

There are times in the early morning, when I sneak in to do a check before a busy day begins. I feels his hand’s warmth and sense the pulse and life force within it. These are moments of thanks and gratitude to the universe for keeping my boy safe.

In the next couple of years my boy will leave home. I will watch him pack his bags and those hands will carry bags out of our home and into an exciting future.

That’s exactly how it should be.

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.