#DUKPC dilemmas

Tomorrow’s the day. Earlier this year I was honoured to be chosen as one of five UK bloggers to attend the Diabetes UK Professional Conference. The past couple of weeks have been a twitter storm, alight with excitement about the presentations and the opportunity to represent our community.

I have been uncharacteristically quiet.

The conference means three days away from my young family. It’s the longest I’ll have been away from my children and since my son was diagnosed with Type 1 diabetes I have only left him overnight once (racing back from my oldest friend’s hen night at the crack of dawn). Separation anxiety has been getting the better of me. Not, as you might expect, because of my son’s condition. He’ll be with husband or at school, and at 10 he is very competent in his own care. The organisation part of my brain has it nailed when it comes that side of things: a well stocked fridge (insulin/glucagon) and cupboard (test strips/ketone strips/ketone meter/CGM sensors/pump reservoirs/tubing/cannulas). It’s the other side of things which slips – costumes for World Character Day not yet complete, the fact that four of my daughter’s five school tunics have hidden themselves somewhere in the house. But I feel the lack of them even before I’ve left: I had to relearn to walk distances when the twins stopped using their pushchair – I was braced, stooped forward, constantly alert to the width of the pavement long after they were scooting merrily ahead of me.

But there’s another issue which has been haunting my peripheral vision.  One that I need to address. Do I have a right to do this? For the other bloggers, Type 1 diabetes is THEIR condition.  They have the right to speak about it. It’s not mine. It’s my son’s. And worse, we have been facing some issues that might bar my brave, self-sufficient son from participating in an activity that he loves and excels at. I have been frantically reviewing my blog to weed out content which might reflect negatively on him, which might cast his condition as something to be feared, that makes him a victim. As he gets older, his digital footprint becomes more of an issue. We’ve been very careful not to use surnames in articles we’ve been involved with and he’s not named on this blog, although his picture does appear. While I’ve been doing this, I’ve stepped back from blogging, changed the privacy settings, and finally changed the name of my blog to make it less identifiable (it previously used my maiden name as part of the URL).

So, do I have a right to join the bloggers? My husband has reassured me that I do. It is my son’s condition but it is a family affair. In a previous life I was a professional writer, and my words are the only weapons I have to fight the ignorance that my son will need to battle. I’m part of a community of thousands of parents to children with Type 1 and I have a duty to use this opportunity to represent them.

Bags to pack, lists to write.  I’ll be there (travelling at the crack of dawn tomorrow, slightly behind the rest of the crew).  I’m looking forward to it now.  Not least for the opportunity to spend some time with the other bloggers living with Type 1, so they can help guide me through their experience on this role that I didn’t ask for, a parent of a child who thrives with Type 1 diabetes.

 

 

 

 

One thought on “#DUKPC dilemmas

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  1. yes… Yes… YES! We NEED your voice in this ragtag community of the skilled and the scared, the brave and the beaten, the hopers and the hopeless. This week, all over the UK there are people just beginning to look around online for experiences of type 1 diabetes that are a bit like theirs. To find voices that articulate their experience, or allow them to reflect on their own. To feel less isolated, more able to face another day of relentless number-juggling nonsense. Some of those are people with diabetes, some of them are parents, or partners, or brothers, or sisters. Thank you for writing, and thank you even more for spemding time away from those you love most in the world to travel to Manchester and share what you find there. Have a fantastic time!

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