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On Tuesday night, I finished my World Diabetes Day at an event at the Western Hospital. It was an event for people with type 1 diabetes, and the topic was diabetes technology, including DIY systems.

There were probably about eighty people in the auditorium. I recognised some – a lot of – familiar faces as the usual suspects (or frequent flyers) who attended Type 1 in the City events from when the series was run up until a couple of years ago.

I’m not going to write too much about the actual content of the event, but I do want to commend the Western Hospital for providing a safe and friendly place to discuss new technologies. When there is a diabetes educator like Cheryl Steele involved in organising a diabetes information session – someone who has always been at the absolute forefront of diabetes technology, and is now a ‘Looper’ herself – you can bet that the program would absolutely include THE LATEST technology, not just approved technologies.

It makes sense for her to feel this way. As more and more people start to investigate Open APS and Loop, and decide to try it for themselves, healthcare professionals in all settings will come across people using it. Denying it exists is ridiculous – does anyone truly believe that if HCPs don’t talk about it to their patients, no one will know about it?

Instead of turning their backs on DIY technologies, the Western Hospital opened their doors to people talking about it, and having HCPs in the room to be part of the discussion. It’s important to remember, the Western Hospital and their staff are not endorsing it, (just as my employer is not endorsing it when I speak about my personal experiences, or the ‘DIY movement’). But they are acknowledging it’s there and that #WeAreNotWaiting for regulatory processes to bring commercial products onto the market.

One of the speakers at the event was Dr Barbora Paldus who is involved in the current Medtronic hybrid-closed loop studies in Australia. Her talk was terrific and she gave great clarity about not only the trial she is involved in, but also closed loop trials around the world. She was clearly interested to hear about DIY APS, expressing her nervousness, but still open to discussion.  She had a lot of questions, mostly about how to bring HCPs along in our decision to build our own loops. She wanted to know how we would encourage open dialogue with our HCPs so they better understood.

The discussion was lively. I felt that for most people in the room, they truly had just discovered a whole new part of diabetes treatments and technologies. Some people said that it wasn’t for them – and that’s fine. But they know something else open to them – something they may not have otherwise come to know about.

I got home at about 10pm and walked in the door. ‘How was it?’ asked Aaron. ‘It was brilliant.’ I said, realising that I was actually really quite emotional. ‘I miss these sorts of events. It was like the old days and the small community events at Royal Melbourne Hospital. We got kicked out of the auditorium so security could lock up!’

These days, I mostly attend events for HCPs, presenting at conferences and meetings. I enjoy this part of my work because it means I can provide a PWD perspective of what happens at those events. And I get to be the human face of the topics being discussed. I do love it.

But here I was amongst my people again – my tribe. And it was great to be there.

Looping, alive and deliberately non-compliant.

Click here for where to buy one of these David Burren designed t-shirts. 

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Each year for World Diabetes Day (WDD), the International Diabetes Federation (IDF) selects a theme and develops a suite of information resources. Member Associations of the IDF are encouraged to take on the theme, adapting the message to their country. In previous years, themes have included eye health and diabetes, access to healthy food, and diabetes education and prevention.

This year, the focus is women living with and affected by diabetes. And apparently, some people are not happy.

There are murmurings on a number of SoMe pages that the theme is discriminatory. Men have diabetes, too! And men care for people with diabetes! Why the focus on women? It’s not all about women, you know!

I’ve had a look through all the IDF materials and other WDD materials from other organisations and nowhere has it said anything about men not having diabetes, or not being involved in diabetes care. That’s not the point of the campaign at all, and if that is all anyone is seeing, they are missing the point.

Why the focus on women? Because health outcomes for women – including women with diabetes – are worse than for men. Women Deliver, a leading global advocate for the health, rights and wellbeing of girls and women, has some outstanding resources that show just how significant these differences are. Some information from the IDF materials:

  • As a result of socioeconomic conditions, girls and women with diabetes experience barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment and care, particularly in developing countries.
  • Socioeconomic inequalities expose women to the main risk factors of diabetes, including poor diet and nutrition, physical inactivity, tobacco consumption and harmful use of alcohol.
  • Stigmatisation and discrimination faced by people with diabetes are particularly pronounced for girls and women, who carry a double burden of discrimination because of their health status and the inequalities perpetrated in male dominated societies.
  • These inequalities can discourage girls and women from seeking diagnosis and treatment, preventing them from achieving positive health outcomes.

And these points don’t even mention women’s health issues such as diabetes and pregnancy, or reproductive and sexual health.

The campaign is not suggesting that men do not experience struggles when it comes to living with diabetes themselves, or are not involved and integral in the care of others living with diabetes.

But it’s not just the exclusion of men in this year’s campaign that seems to be a problem for some. I’ve seen a number of people complain because they feel the IDF materials are not talking about the great things women with diabetes can do. We can work! We can travel! We can have healthy babies! We can jump out of aeroplanes! We can be successful career women! We can run marathons! We can start businesses!

Of course we bloody can. And, again, nowhere in the campaign collateral is there any suggestion that women are not capable of doing these things. And if you are one of the women who is able to achieve all of those things, despite your diabetes, that is fantastic! But it is the very definition of privilege to think that just because your life is one way, then it must be the same for everyone else – or that if something is not a problem for you then it mustn’t be a problem for anyone else.

Those of us in a position of privilege can use WDD to draw attention to those in need. We can encourage others to donate and to lobby. We can highlight the inequality and inequity of health outcomes for different groups of people. This year, it’s about women.

And you known what? I can’t wait until diabetes health outcomes are the same for everyone, regardless of gender. Because then we won’t need to have a women as a theme.

Oh, did you know that next Tuesday is World Diabetes Day? There have been a few things online about it, so it may have come across your radar…

The International Diabetes Federation sets a theme each year for WDD and this year it is all about women and diabetes.

Diabetes Australia (disclosure: where I work) is running a campaign to acknowledge and recognise women living with diabetes, and women who support those of us who do.

We have developed a series of superSHEroe characters, representing just some of the amazing women affected by or working in diabetes. (The artist for these is the brilliant Claire Murray who I wrote about earlier this year. She is the creator of Megan, a wonderful diabetes superhero. Claire herself is somewhat of a superSHEro – her superpower is the ability to superbly draw and capture diabetes.)

Yesterday, we introduced the Dynamic Duo – Fantastic Frankie and her mum Lightening Lou.

I love this one so much because I feel that I have my very own Fantastic Frankie in my fabulous daughter.

My kid is my superSHEro. She has grown up around diabetes and while she doesn’t have it herself, she has undoubtedly been affected by diabetes because I live with it.

She came into this world and my diabetes meant that she needed to spend time in the special care nursery of the hospital. It meant that she needed to have her heel pricked for the first few days of her life multiple times to make sure that her glucose levels weren’t low.

She has grown up knowing to be careful of diabetes devices attached to my body when she jumps in for a cuddle. She had to learn early that there were times I simply couldn’t play with or read to her because diabetes needed my attention more urgently that she did. And she learnt to wait her turn, knowing I would always get to her; it just may have been after a juice box or jelly beans were consumed.

My superSHEro may not wear a cape or a mask, instead she’s likely to be wearing something she pinched from my closet. She may usually have her head in a Jane Austen book rather than lassoing the bad guys. She can be found lying on the grass out the front of our house with her puppy (who has no superpowers whatsoever, I’m afraid) or hanging out with her friends, listening to music rather than uncovering plots to bring down the free world.

My own superSHEro is bundled up in the mess and wonder of (two weeks from being) a teenager. She may be moody one moment, and delightfully snuggly the next. She is perpetually embarrassed by her parents, and horrified at the extent we will go as we desperately try (and fail) to prove to her just how cool we truly are.

But she can also be found grabbing me a juice when I’m low; asking me if I need anything when she notices me acting a little vague (usually just me being vague rather than anything else) or doing a spot of awareness raising and advocacy for diabetes. My diabetes isn’t hers – it doesn’t have to be and I’ve done everything in my (non super-) power to shield her from it – but she has taken it on in her own way.

Her superpower is her strength, her mind, her feistiness and fierceness, her vulnerabilities and her compassion. She takes on the world, she takes on my diabetes. And, (regretfully at times) she takes on her parents.

We wouldn’t have it any other way.

My superSHEro and her mother.

 

What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.

Mayo Clinic in Oz

I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.

Crown

Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.

Talking diabetes without being rude

We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.

I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.

One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.

So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!

Gilmore Girls

One week to go. We are ready!

WDD Twitter Marathon

The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.

There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.

Blue fatigue

My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.

It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.

But the people; the people!

I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!


It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.

#IFLGseesawchallenge

And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!

So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.

Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.

Yesterday, I went to the fridge and pulled out a fresh vial of insulin. I used it to refill my insulin pump and then placed the mostly-full vial in my bag. As it was the second to last vial from my current prescription, I called my local pharmacy and asked if they could order me in a repeat of my prescription.

And then I wandered to a favourite café for breakfast and didn’t think about it again. I knew that the following day I’d receive a call from the pharmacist telling me that my insulin was waiting for me and I’d go in on my way home from work, fork over $40 and be set for another three or so months.

Rocking my new Insulin for Life Global tee. So honoured to be an ambassador for this worthy cause.

That’s not how it works in a lot of other places around the world. And it’s why when I was contacted by Joanna Sader from Insulin for Life Global asking me to be an Ambassador for the organisation, I didn’t hesitate before answering ‘Of course!

Insulin for Life has been around for a long time. I remember when I was very new to the diabetes organisation world hearing all about it from the organisation’s founder Ron Raab. And then, a couple of years ago, I saw a wonderful documentary, Sweet 16, about the program, made by a young woman from Canada.

The organisation has continued to expand over the years, and today, on World Diabetes Day, is launching Insulin for Life Global (IFL Global). The organisation contributes to international efforts providing insulin to people unable to afford or access insulin or diabetes supplies in developing countries.

IFL Global, through its country affiliates, collects in-date and unneeded insulin and diabetes supplies, distributing them to developing countries, where they are distributed free of charge. It also fundraises to support transport costs, which is the biggest barrier to keeping the operation going.

You can learn more about the program by going to their new website and by watching the video below.

How can you help? Glad you asked! There are many ways you can get involved including making a one-off or regular donations, promoting their work through your networks or donating unused, in-date insulin and diabetes supplies. Details about how you can contribute to IFL Global can be found here.

I write a lot about remembering to look outside our bubble of privilege. Insulin for Life Global is another player in the space reminding us that diabetes drugs and supplies are not a right for all. And we can – and should – do something to help. Our diabetes brothers and sisters around the world do not deserve to die because they cannot access the life-saving drugs so many of us take for granted.

 

November is a big month in diabetes. For those of us living in Australia, the main event is World Diabetes Day on 14 November, but I’m certainly happy to be swept up in the USA’s Diabetes Awareness Month.

For the next four weeks, there will be a lot of diabetes awareness about and it’s a great opportunity to speak about real life with diabetes, dispel some myths and set the record straight when someone tells you to increase your cinnamon consumption to cure your diabetes.

Get your blue on…

Blue is the colour of diabetes and, this month, it’s my colour of choice! (Including this potentially misguided nail colour. My manicurist actually said ‘Are you sure?’ when I picked it our yesterday.)

I’m stuck with these nails for a couple of weeks now, but plan to accessorise with a lot more blue (including the blue mascara and eye liner I bring out just for November!)

And a throwback to 2011 (seriously!) when Cherise got a few DOC folk together to make this video. Wear blue!

Diabetes is not about numbers. Until it is.

JDRF has this nifty calculator on their website that (somewhat scarily) adds up the numbers to show just how many diabetes tasks we’ve undertaken in our diabetes lives. Here’s mine (as of yesterday).

I am the first to say that diabetes is not all about numbers, but I do love this because it shows the magnitude of this condition and its relentlessness. You can get yours here.

(And JDRF UK has their own here.)

What is diabetes awareness month all about anyway?

In fact, what are ALL awareness months about? This beautiful and throughtful post from Jessica Apple from A Sweet Life (online magazine) is definitely worth a read.

And this take from a Diabetes Dad…

And Tom Karla (AKA Diabetes Dad) has this to say about just who this whole month is for. (Spoiler: it’s not for those of us already living with diabetes!) As I said on Twitter yesterday – I spend a week every July (during National Diabetes Week in Australia) trying to explain this. Will be forwarding Tom’s post far and wide from now on!

 7 day online peer support…

Did you know that there is a free online Peer Diabetes Mentoring Summit running right now (until 7 November). Diabetes Dominator, Daniele Hargenrader, has coordinated this fab event and you can claim your free ticket here. So many terrific sessions with great speakers to follow!

Photo challenge

There’s a fun photo challenge for the month from Project Blue November. Using the prompts they’ve provided, post a photo each day to your SoMe feeds to share your life with diabetes, tagging the pic with #ProjectBlueNovember. Here are the prompts:

 

What I’d tell myself at diagnosis..

Lovely piece from the team at Diabetes Forecast where some PWD share the wisdom they would give their newly diagnosed self. Read it here.

And here’s the letter I wrote to my newly diagnosed self a few years ago. It still holds pretty true!

Circled

The International Diabetes Federation’s WDD selfie app (download for free at the app store) allows you to add a blue circle – the international symbol for diabetes – to any photo you’d like.

Big Blue Test

And of course, November means that it is time once again for the Big Blue Test, brought to us by Diabetes Hands Foundation. Over 125,000 BBTs have been logged since the program started in 2010. Easy peasy lemon squeezy instructions are:

Get logging for good karma. There’s even an app you can use to make it super easy. (And yes – I’ll be logging before and after I take the pups for a walk!)

Keep in perspective.

It’s really easy to get overwhelmed by everything diabetes that’s going on this month. If your SoMe feeds are anything like mine, they will be overtaken by diabetes and there really does seem to be no escape.

Which is why it’s important to remember that we are about so much more than diabetes and find time in the month to do things that remind us of that. We have a couple of birthdays to plan and an upcoming trip to New York to think about – all things that will hopefully keep the whole month in perspective. Plus there is always baking…maybe some cookies…

I frequently say that diabetes takes a back seat to other things in my life. Often, they are gorgeous and pleasurable and fun things – like birthdays and holidays and hanging-out-with-the-people-I-love-days.

Other times it’s because I am too busy and running around, life, work and everything else means that diabetes gets attended to when and where I can manage it.

And, of course, other times it is because I just can’t – my headspace will barely allow it.

But with World Diabetes Day, we are pretty much guaranteed that diabetes – our own and on a larger scale – will be attended to. There will be focus, there will be fuss, there will be attention.

Not this year. This year, for terrible and horrible and heartbreaking reasons, diabetes took a back seat. Because it had to. My heart bleeds, not only for Paris – a city that means so much to me and my family, a city Aaron and I visited only last month, a city where we have spent some of our happiest days – but also for the world where this happens all too regularly.

I have no more words about World Diabetes Day this year. Other than to say, it is over and felt that way, almost before it started.

Jean Julien's 'Peace for Paris' sketch gets the WDD treatment.

Jean Julien’s ‘Peace for Paris’ sketch gets the WDD treatment.

Today, Australia has a new National Diabetes Strategy. I would be lying to you if I said that I had read every single word of the document (but, hey, knock yourself out and have a read here). I have had a skim. Now, every part of this Strategy is important – of course it is – but today I want to highlight type 1 diabetes in the document.

A lot of the Strategy crosses the boundaries of all types of diabetes, for example in the priority groups such as ATSI peoples, CALD communities, and those living in rural and remote areas. Attention to complications screening, recommending mental health screening at diagnosis as well as including regular monitoring in the Annual Cycle of Care, including diabetes-specific education and training to hospital staff. Services for women with pre-existing (types 1 and 2) diabetes planning and during pregnancy are considered with particular emphasis on pre-pregnancy planning and access to expert education.

While this is understandable – and there are many similarities in the way that these issues are addressed – there does need to be attention to the complexities type 1 diabetes brings. (Equally, the complexities of type 2 need to be tackled!)

But how is type 1 addressed?

Firstly, yay for a concise and accurate definition of type 1 diabetes. In fact, these 50 or so words could be used by any media outlet next time they need to define the condition! Also, well done to Sussan Ley (and her advisors) at this morning’s media briefing for giving such an articulate and well-informed summary of the diabetes situation in Australia.

12246825_10153722947215789_6667088770494981066_nVery pleasingly, early diagnosis of diabetes is one of the key goals (Goal 2), and type 1 diabetes is given its own treatment, including potential areas for action and measures of this progress. The Strategy acknowledges that 20 % of people newly diagnosed with type 1 diabetes present to hospital in DKA. This needs to change. Better awareness and recognition of type 1 symptoms to improve early detection are flagged as potential action areas.

Type 1 diabetes in the school setting is mentioned, specifically looking at better supporting families, and children to participate fully and safely at school.

In the piece about transition from adolescent to adult healthcare settings, access to psychological services is emphasised.

Could there be more? Well, of course there could. Diabetes is such a huge issue; there can always be more. So, what would I like to see that hasn’t made the cut?

Well, I would have loved there to be something about diabetes technology, specifically around pathways for approval and access of emerging technologies, as well as sorting out issues with access to currently-available tech.

I would have loved for the early diagnosis topic to be broken down a little more. It’s an issue at all stages, but poses a particularly significant challenge for adults with type 1 who are often misdiagnosed based on their age. It can take a lot of time – and a long period of poor health – before they are correctly diagnosed and treated as necessary.

More attention to structured education programs (such as DAFNE and DESMOND) and their value. And how new programs, such as the valuable POSH program (addressing impaired hypo awareness), could be funded.

Breaking down the section on healthcare access for Australians in rural and remote areas and focus on particular problems faced by those with type 1 in those areas. Specialist diabetes care in these areas is minimal; type 1 specialist care is even harder to find

The same could be said when addressing the management and treatment of type 1 in hospital and aged care setting. Type 1-specific education is essential so we stop hearing people getting lousy treatment.

Of course, this is a high level document and the detail is simply not in there. No dollars have been allocated to the strategy. The devil is in the detail – and we just have to see how that plays out.

Finally, I’m not surprised to say that already the naysayers are out complaining about the Strategy. It’s the usual thing with the usual suspects complaining amongst each other and not offering any suggestions or looking at the positives. I wonder how many of the people complaining actively participated in the consultation stages of the development of the Strategy. I am just stating this here because really, it’s tiresome hearing the same complaints about the same issues. I have some concerns too but I am also willing to acknowledge this as a progress and a step in the right direction.

Happy World Diabetes Day to everyone for tomorrow. Shine a (blue) light on diabetes.

Panel at MedTech

Panel at MedTech

I’m in Sydney today for the MedTech conference (follow along at home #MedTech2015) and also swamped with the usual World Diabetes Day happenings. Which I love, because it is a chance to speak about diabetes more than usual.

On my flight up here today, I re-read some of the things I’ve previously written about World Diabetes Day – and, more broadly, Diabetes Awareness Month – and thought I’d revisit some of them today.

Like this from the first year of writing Diabetogenic. (Contains lightsabers.)

And this, where I admit to wearing blue mascara, but thankfully the photographic evidence is poor!

This post tells of a crazy 2 days which kicked off with research awards, moved on to a very early morning flight to Sydney so I could do some diabetes myth-busting on a morning television show and ended with me participating in a 24 hour tweet chat. With lots more in between!

With so many different World <insert cause here> Days, explaining why we need one for diabetes (or anything else) can be tough. But here, I justified the need, sharing my own story of a hypo that wouldn’t quit and the advocacy that came after it.

And one of the proudest mum moments I’ve had is in this post when I wrote about how our daughter became my favourite diabetes advocate with her impromptu awareness raising activities at school on World Diabetes Day.

It’s always a busy, blue-tinged time.

image

I was driving to pick up my daughter from school last Friday afternoon, and could feel the pressure of the previous week lifting. World Diabetes Day was all but over. There was, of course, the matter of a 24 hour tweetathon organised by the clever Cherise from DCAF, but that would be fun and interactive. The official things were over. Done and dusted for another year.

The thought of picking up the kidlet and chatting about her day, and things we had planned for the weekend made me smile. I’d been distracted with the craziness of the week and we’d not had our usual long, meandering conversations. I was looking forward to hearing what she’d been up to and NOT talking about WDD.

She ran out of her classroom to greet me, a big smile on her face, her bag hanging from her back and her latest book in her arms. And off she went filling me in on the day she’d had.

After telling me who she’d played with and what she had done in PE and reminding me that on Monday her Italian Choir was rehearsing for an upcoming concert at a neighbouring school and that she would really like to go cherry picking soon and how Sooty would like a run in the park, she said, ‘I told Mr D that it was World Diabetes Day today. I wrote it up on the board at the beginning of the day.’

I looked at her, surprised at the direction her stream of consciousness conversation had just taken.

What’s that, darling?’ I asked.

‘This morning. When I got to school. I told Mr D that it was World Diabetes Day and he said I could write it up on the board. Then we had a discussion about it.’

‘Really? What did you talk about?’

‘Mr D wanted to know if there was anyone who knew someone with diabetes. Of course, I said I did. And so did A.’ She was referring to my beautiful neighbour Jo’s gorgeous boy who is in the same class. ‘And S – her grandmother has diabetes. Type 2 diabetes. She checks her blood sugar like you do.’

‘I was surprised that Mr D knows so much about diabetes. But then he said that one of his friends has type 1 – that’s why he knows about it. We spoke about the different sorts of diabetes. A and I were saying that type 1 is because the body stops making insulin. And we talked about pumps. Hey mum – can we go get iced chocolates for afternoon tea?’

Subject changed, we headed to our local café, sat outside and enjoyed the sunshine.

I looked across the table at my nine year old as she slurped at her iced chocolate. World Diabetes Day is about raising awareness of diabetes to people in the community. In her own little way, she had done that in her classroom. Just because she could. Just because mum has diabetes. I had a little advocate on my hands. And I couldn’t have been prouder.

My little advocate

The kidlet and her side kick.

 

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