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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Life is good


When an unwelcome visitor, such as Type 1 diabetes, comes and takes residence in your family, life changes. Things feel really serious for a while as you get to grips with counting carbs, calculating insulin doses and helping your child deal with the reality of living with Type 1 diabetes. All of this takes time.

My way of dealing with it was to keep life simple and not put too much pressure on myself. Feeling tired from initial nightly testing backed up with a full time, busy job meant I didn’t socialise as much as I had before. I’d see a few friends but not as many as previously.

  

Two years into this journey, it was time for some fun! What a great afternoon was had. Around fifty fab females arrived, dressed in black and white, bearing silent auction items, extra bottles of bubbly and above all a desire to have a laugh and raise money for a good cause.


Jellybean count – 194 painstakingly counted jelly beans. Two jars!

Dahlias for diabetes! I made about 15 different dahlias and sold them all. I think I should have charged double as they were snapped up pretty quickly!

This was such a great way to reconnect with all my extended friendship group. We had such a fun afternoon,  eating, laughing, drinking prosecco to the backdrop of a sunny Australian afternoon and the beat of a Seventies playlist on Spotify. Most of my favourite things in one place.

I didn’t involve the men in the House of Testosterone but on Saturday morning the lawn was mown, the vegie garden was weeded, bunting was hung up and the whole place looked like you want your home to look like all the time. They certainly did come through for me.

The next morning, I counted up the money and we had collected $2200 in one afternoon. My lovely, patient husband asked, ” Do I get you back now?”. Planning this event, whilst enjoyable, was very time consuming.

My middle son who has Type 1 diabetes came up, gave me the kind of cuddle that melts a mother’s heart, and said,  “Thank you, mum”.

On Monday morning I arrived at work with lots of leftover cakes and goodies. Many happy faces and a few extra dollars were collected. I basked in my little bubble of contentment when a work colleague, a lovely, normally witty man, reached past me, grabbed some cake, asking, “This won’t give me diabetes will it?”

Back in the real world now, I looked him straight in the eye and said, “That is not funny on any level, ever!” He later came and apologised. I don’t blame him but perhaps I can help educate him.

I am still feeling wonderful. Lots of money has been raised for a good cause. I’ve realised how lucky I am to be surrounded by great people. My son lives in this same community and I feel there are more people around him now who understand better. 

Fun for a good cause! 

Fun for a good cause is my current focus! 

I want to raise money for JDRF. We don’t live close to any walks and weekends are already filled with sport. I came up with the idea of a black and white themed high tea with bubbles. By charging $10 a head on the day then asking for a small item for a silent auction ( could get a bit crazy after a few bubbles, I hope ! ) , I’m planning to have some fun with some of the amazing women in my life and raise a few dollars at the same time. 

Since sending out the invitations, I’ve come to realise the amount of support my family has. People have been so positive and keen to be involved. It has also given me a chance to explain what my amazing boy (and all the children and adults with Type 1 diabetes) do to manage diabetes. It’s been a very humbling experience! 

   

Hopefully no one else in the area needs black and white decorations! They are all in my pantry! My weekly purchase of six bottles of prosecco is beginning to concern the local bottle shop owner.

Pinterest has been plundered for ideas! Making huge paper dahlias as table decorations and wall hangings has been such good fun and maybe I can even sell them at the end as Christmas decorations! It’s the first time I’ve deliberately destroyed a book in my life. The local op shops are a great source. I used one of my son’s old Hardy Boys reads for the first one as I was just too impatient to wait: I won’t make that mistake again but it’s great to see he actually does love books!

I’m so lucky to have a friend who is a high tea aficionado and she is my unofficial events coordinator ( I’m just trying to sound fancy!). Weekly meetings at the kitchen table over a glass of wine have been such fun! 

So far about forty giggling gals will be showing up for a good cause and a few laughs. Wish me luck as preparations increase!  Living in the House of Testosterone with three sons and a husband (I’m sure the goldfish is male too – he only looks at me when he needs food and he leaves his crap everywhere – sorry, bad mum joke!), I’m looking forward to some girl time. I told all the males that they were only welcome if they would be waiters (preferably topless!). Alternate plans for them are afoot!