Type 1 diabetes doesn’t consult with an individual before taking residence in their life forever. Whether a baby of six months, or an established adult of 42, if your immune system brews the perfect storm, there will be no escaping the diagnosis. Once your immune system has wrongly identified the insulin producing islets in the pancreas as a threat to the body, the only certain outcome is a life of insulin dependency ahead.
When Pumplette was diagnosed at seven months old, I naively assumed that she was in some ways, lucky. She would always be at peace with her diagnosis. After all – those 226 days before T1D would only be committed to my memory. She would not ever know a life that didn’t involve numerous sharp implements being inserted into her on a daily basis. Her position as familial pin cushion assured, I foolishly thought she would grow accepting her lot in life.
I realised my idiocy when, aged 3, she fixed me with her big brown eyes and confidently pronounced that when she was 5 she would no longer need her insulin pump. I very gently tried to explain that was very unlikely as researchers were still busy looking for a cure for her but hadn’t quite managed to find one for her just yet. She was unmoved by my words, merely eloquently expanding on her pronouncement. Her argument was simple. Her 5 year old sister didn’t have a pump. This meant she wouldn’t need hers by the time she hit 5.
The poignancy of the thought process that led a 3yo to reach this conclusion utterly flawed me. Three year old children live in the present. Tomorrow can be a difficult concept for some to understand. They live a narcissistic existence living in the here and now, gathering information and skills they will need to help them establish new methods of independence. The fact that this little girl had not only appreciated at this tender age what happened to her on a daily basis wasn’t usual but was then able to project into the future to such an extent left me feeling more helpless than at any other point in our journey.
When she was diagnosed I was acutely aware of the privileged position we as her parents, had. Unlike many other parents of children diagnosed with T1, we had only to deal with our own emotional turmoil of the diagnosis & manage the impact the diagnosis had upon our eldest daughter. Our little baby had no words to describe how she was feeling or how the tyranny of fluctuating blood sugars made her feel. I took this for granted and it didn’t occur to me that it would end.
So when her ‘awakening’ and own ‘diagnosis’ occurred I was poorly prepared. Lessons learnt over the past 10 years have taught me that acceptance of the diagnosis is an ongoing process. One which ebbs and flows. Some days are easier to prepare for battle whilst some days need cavalry support. Realising this fact is liberating. Helping her understand that it is ok to find things difficult and reach out for support can, I feel, only be a positive force in her life. As I found myself explaining to a senior teacher at her school recently – she is able to carry out all the procedures she needs to to keep herself alive from day to day, but often prefers to delegate these responsibilities to me. This is fine by me. After all, the road ahead is long and full of exciting adventures and challenges. If my helping shoulder the load whilst she is still willing to reach out and share, helps her be both mentally and physically stronger for that long road, it can only have a fantastic impact on her future.
The lessons you learn with T1D are often brutal. They will completely blindside you whilst you’re busy attending to some other aspect of the condition. Every patient has their own unique struggle, not least because T1D doesn’t ever conform to a set list of rules. There can be no standardised treatment for pwd/cwd, because we are all fabulously unique. Helping my daughter to celebrate and understand this fact has meant she has a great relationship with her HCPs. She sees me consulting with her consultant and enthusiastically joins in. She appreciates that none of us have all the answers – we can share ideas and learn some theory from her HCPs, but ultimately it is our ‘on the ground’ knowledge that means we are the experts in her diagnosis. This gives us the confidence to challenge, question and strive for the best available treatments and outcomes for her health.
And in answer to the question in this blog title – there is never a right time. But there is always time to learn, listen, nurture and celebrate the very many victories our little family has on a daily basis.