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!

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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.

Neither fish nor fowl

As things currently stand, I find myself in a grey area with regards to my son (and his Type 1 Diabetes). I don’t have a name for it but it reminds me of when I lived in Italy in my twenties and an older lady I worked with described her son in his late teens as ‘né pesce, né carne’ ( in English we say ‘neither fish nor fowl’) to describe that ‘in between’ state in which my son currently finds himself. This stuck in my head as a weird expression but now I totally get it and wish I could go back and have a chat with that woman.

My son is growing but not grown.

He is gaining independence but not independent.

He is both a man and a boy.

He knows everything and nothing.

He yearns for freedom but needs boundaries.

The fact that he can drive but only has Ls sums it up!

Where does this leave me? I have been there with dogged determination every step of the way since his diagnosis four years ago. He is fairly independent and he can manage his diabetes well. He knows how to calculate his insulin doses and work out the carbs in his food. He knows the impact of sport and how to adjust for this. He can go out for the day and I am not concerned.

We have a lovely way of communicating via text when face to face convos are just too emotional and hard because it does get hard. There has been no running away from that this year. Technology has helped us and some days as I sit at my desk at work and he sits on the school bus we have a beautiful little written dialogue where we let go of the worries and anger that can start off the day and we both then move on feeling much better.

He has just got on a plane to Victoria where he will play in a cricket competition for the next week. I am feeling confident that this will go well. He will focus on the important thing- cricket!

This confidence is backed up with the knowledge that the Diabetes Educator trained the two staff on the trip. There has been information exchanged by me with the family where my son will stay and he will be woken by them at 3am each day to check his Blood Glucose Levels.

He has now started his last year at school. It’s a weird system in New South Wales, Australia. The first term of the final year of school starts before the summer holidays so he has hit the ground running for his final year. This time next year, School will be over just like it is for his big brother who is currently on a ‘gap year’ to recover from the huge amount of study of the final year of School. Guffaws of laughter were heard when this idea was muted but we do get it and will be encouraging our other two boys to do the same thing.

What is my role now?

I feel like I am on the side lines: the linesman. No longer the referee on the field, making the big decisions. I watch from outside the action, intervening only when strictly required. Sometimes I let things go but at other times I need to come down hard. It is quite clear that I am now an observer rather than a participant. I am also a partisan linesman! I actively support too! I will not allow foul play and I will protect my boy with my very being. Do not mess with me!

Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

Disco Inferno (Otherwise known as a night out for parents of a child with T1 diabetes)

    

   

  
 
I wrote this after we had a great Christmas night out with all the people from my work. We still had a good time but I didn’t totally relax once that phone buzzed. My boy was only looking for some reassurance and I realised this the next day. 

I refound my mojo that night, even just for a brief while, and that was fun! It was all I needed to remind me that I love that man of mine too! He’s the Kel to my Kath! Best Christmas present ever!

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.