Tom's Story

9 April 2021 “We are diagnosing type 1 diabetes for your son”. And so it began. I am sharing my diabetes story as the parent of a now 11 year old boy, someone who is thriving, living his life, soaking up every minute possible with football whilst balancing this hidden condition at every turn. From what I have learnt, our story really isn’t that unique compared to so many others I have got to know who have type 1 in their life, be that through their children, a loved one or even for themselves. Our son became progressively more and more unwell, like most seem to do. What we now know as the symptoms, the 4 T’s were staring us in the face and what’s interesting is when the diagnosis came and we had an answer, knowledge of those symptoms came front of mind. I had heard of them, but of course we asked ourselves why didn’t we spot them sooner. What may be a little more unique, is we discovered he has coeliac too. This is a condition that requires a strict gluten free diet as the only form of treatment. Thankfully, despite blood sugar levels of 44 mmol/l at the time of arriving in hospital, DKA (diabetic ketoacidosis) had not presented. So from that point, everything started to unravel quickly. Too quickly to digest. An out pour of support from friends and family was reassuring but equally nothing seemed to register. Whilst everyone said our boy will be OK, we were being guided by the medical team on how to inject insulin and why it's critical. ‘How is this going to be OK’? 'What if we get this wrong?’. “Is there definitely no cure?' People reading this who have been through the same will get the enormity of that. When we finally understood why insulin was needed, we were then told we will sometimes need to treat his blood sugar levels with sweets instead of insulin in cases where they drop. ‘What?’ ‘Why?’. We really did come at this with little to no knowledge and what we thought we knew was all based on false information the general population seem to have. The practical steps that surround this started to come together including his care plan at school. Emotionally, things were heavy for the whole family. The taurma of how unwell he had been took time to ease, not to mention we worried intensely (and still do) about our sons state of mind. 'How does he feel about this?’ 'He seems OK some days, but then other days emotions come to the surface’. In those early days, when we were asking our nurse if our son ‘can eat' this or that, we were encouraged to pause. The next statement has never left me and I pass it onto anyone who asks for advice. ‘Do not let type 1 tell you how it’s going to be’. We were then told we will be taught to manage our sons type 1 through insulin and not diet. This essentially means our son has the same balanced diet he always had, we removed nothing from it (except gluten due to the coeliac). We have been taught how to count carbs and calculate insulin so he has no barriers around food. Do some carbs require extra work, yes! But do we avoid them, no! We decide how it's going to be, so if Friday night is pizza, ice cream and movie time…that’s what we do. The journey continues. We strive everyday to keep blood sugar at the target level. Thankfully, through rhythm and lived experience we hit our target more than not but accepting there will be days where we don’t took time. When you are aware of how unwell your child can be if blood sugar isn’t managed well, nothing but perfection will do, right? But life is a balance and that is no different with type 1. Watch out for further posts explaining how blood sugar levels are managed, sport management, secondary school considerations and much more.