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┬ámost 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!)

Advertisements

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!