 This week I was faced with a question that prompted reflection on our early days as a newly diagnosed Type 1 Diabetic family (6 years ago). I have always felt like I existed in this time in the hospital in a haze, with information spewing around me and there I sat on Harrison's hospital bed, trying to internalise it all and make sure I knew what I needed to know to keep my son alive. We bought a notebook and everything the Dr explained was feverishly written down: "Notes on how to keep our son alive".
Imagine writing the hardest exam of your life, only, while you are doing so you are also processing the near loss of your child, and his ultimate diagnosis with a Type 1 Diabetes. It is up to you to pass this exam under these conditions, and to do so with flying colours because the alternate could be fatal. We were lucky to have received our education from a specialist in the field and there are many who are not given this opportunity and are almost left to their own devices to take care of themselves with this disease that they have barely had an education on. Heart breaking to dwell on this uncertainty after as big a diagnosis as Diabetes - whether it is Type 1 or Type 2. Can you imagine the most important education of your life - can you imagine needing this education and just not getting it at all? A few weeks out of hospital and I began my journey of sharing our diagnosis story, and the things that we have learned along the way. It's always been ingrained in me to capitalise on the opportunities life throws at us - whether they're good or bad lemons. My heart was always set on creating educational material that would adequately help newly diagnosed families of young children navigate these early days especially: A glossary of words explaining some of the terminology, carb counting 101, what I like to call the diabetes triangle which is my explanation for the relationship between carbs, glucose and insulin... There are many diagrams and illustrations in my mind that help explain difficult concepts in easy ways. Perhaps there is still an opportunity here who knows. All I need is time and a big corp that is willing to fund the rest. I think the hardest lesson as a caregiver of a Type 1 Diabetic is not to let go of your own self. Your children are your priority after all, but that doesn't mean you sacrifice all of you. They still need you at the end of the day. So it is important to make sure you are looking after yourself and that you set yourself up with the support system you need to make it out alive as much as your child needs to. Those words are easy to say - hard to put into practice. I can understand that. You probably have a list of things that you wish you had learned in the very early days of diagnosis... Leave a comment or email me [email protected] - I'd love to compile and share with our fellow T1 families.
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