My son was diagnosed with Type 1 diabetes a few days before he turned 13. He is now well into his eighteenth year. What a huge five years they have been and now seeing him as a young adult, I cannot help but reflect back on those years.
I spent those years in the buffer zone, protecting my child from the world. I was thrown into understanding the complexities of diabetes when my son was diagnosed; learning about carb counting and insulin doses whilst he concentrated on learning how to give himself insulin shots and check his blood glucose levels. This teamwork continued through the first few years with my boy gradually learning more about carb counting and how the various activities he did impacted on his blood glucose levels. This felt like a fair exchange. He was able to go about his life and I was the person who kept in touch with health care providers and school.
Being a teenager meant that the path was sometimes bumpy but we encouraged our boy to live a full life, as we did with our other two boys, in the full knowledge that perfection was not a prerequisite for our full love and support. Sadly, we did not find that all the institutions around us were quite as understanding. There’s something about being a teenager and having a chronic condition. It felt as if my boy had used up all his graces in one fell swoop and was expected to be a model human being in all areas of his life. I struggled with the expectations put upon my child, whilst trying to keep him safe. That’s when the buffer zone was a horrid and lonely place to inhabit.
Zoom forward and now school has finished, a University place awaits him next year and a new health care team is in place. I no longer feel like I need to be a buffer. Harsh judgements are not meeted out and thought is given to the person behind the diagnosis. My son is as safe as he can be.
He is a strong capable young man who can now deal directly with the world. He knows his dad and I are here for him always with open arms and no judgement. He is now an unofficial mentor for a young boy who also has Type 1 diabetes. This young boy comes over once a week and does his homework with my son. The focus is anything but diabetes. Spelling words are practised, times tables worked on and footy discussed but underpinning that, a lovely quiet connection is building which I hope will last for many years.
What do I do now with all my new found time? I am totally relishing it! Baking daily sourdough, cooking my way through the latest Ottolenghi cookbook, getting to hang out with my man, spending time with close friends and occasionally enjoying being alone for the first time in years. Who knew it? I quite like my own company and the silence and peace it can bring.
I haven’t quite figured out what to do with my online identity as ‘mumoftype1’. The diabetes online community has given me so much. When I felt totally lost and isolated, both geographically and emotionally, I found support and learned from people with real lived experience what I needed to know to keep my son safe. I have made friends and slowly got to know more about people than their connection to diabetes.
People come online asking the same questions that I asked a few years ago. It takes me right back to where I was. Did we get everything right in that time? Absolutely not, but we got there! Sometimes I reach out and through this have made some beautiful connections but I don’t have all the answers, and I do not have diabetes. My son’s story is his to tell and my focus when writing has always been about my role as the parent of a young person with Type 1 Diabetes.
I feel so many different emotions as I write this but overall I feel such pride in my boy and in our family. I know the future will unfold with its own challenges but I know we will be fine. For that I am so very very thankful.