Time and lived experience

For me, the hardest part of my daughters’ Type 1 Diabetes is not being able to control it. I cannot make it go away, I cannot make it better and I cannot fix it. We have to almost co-exist with this condition and become partners in a way.

In the last 6 months what I have realised is that we need to become a formidable opponent to Type 1 – Anna’s condition is so sensitive, precise and particular that for us to manage it well, we need to ensure we behave in the same way.

By this I mean we need to give our daughter the best possible opportunity to not only manage but thrive with Type 1 Diabetes – what does this look like? Many things on any given day. For us, since Anna’s diagnosis in October 2017 we have learnt that managing Type 1 well, can only be done with time and lived experience.

This may be an unfortunate realisation for many but it’s just the way it is. Time gives us the ability to learn by not only having some win’s but also by making mistakes. Lived experience is perhaps the best possible teacher. I am not taking anything away from literature, studies and research and Anna’s health care team – in my opinion, they are absolute champions! They have taught and supported our family since day 1 and we are grateful for this.

Learning by lived experience comes from doing, watching and listening to others. Be prepared to make mistakes because that is how we learn. Talk to others who also have Type 1 in their lives and ask questions of your health care team. Be careful not to look too far ahead – take a day as a day and try your best now. Tomorrow will come eventually.

Yesterday, I had a thought that T1D can be like a very fine and delicate thread woven into life’s fabric – if we focus so much on protecting this fine thread then we lose sight of everything else leaving it to fall apart. We need to be careful to avoid this – Type 1 isn’t going anywhere just yet so let’s choose to do our best, pick our battles wisely and remember that big journeys, start with small steps.

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