This post is from a parents perspective on living with and caring for a child diagnosed with type 1 diabetes. It delves into our journey, from diagnosis to where we are a year on.
The photo above of my family is really special to me. It was taken on a whim with no posing, prompting or preening. This was taken on the evening we were discharged from the hospital after my daughter (in the yellow) was diagnosed with type 1 diabetes.
I can’t express in words how wonderful a feeling it was to see my daughter full of genuine joy again after a period of feeling really poorly. I am writing this, even a year on, holding back the tears. We watched her disappear before our eyes, not only physically, but emotionally as well. However, after only a few hours of amazing NHS care, an IV delivering much-needed fluid and insulin, I could finally see my daughter returning to us. Yet I had little comprehension at the time of how living with type 1 diabetes would change us as a family.
This is our journey…..
For quite some time we knew that not everything was quite right. We were in lockdown and my daughters year group hadn’t returned to school, so she was with me every day. At first, you notice little things like becoming a bit slimmer and a bit more lethargic. But she was about to enter her teens, she had a huge growth spurt over a short period of time and it was exceptionally warm. Well, this is what I kept telling myself anyway. But then it just became even more noticeable. She was always in the loo, couldn’t go to bed without taking a massive cup of water, would wake in the night to drink and had to sleep even in the day.
I still berate myself for how long it took me to call the doctors to have that first conversation, but I guess that comes with the territory, never-ending parental guilt. Once we did manage to see a doctor, it was and still feels like a whirlwind. We went from a suspected diagnosis of type 1 diabetes by the GP, to rushing to the hospital. We were then swarmed, it felt like, by so many people. My daughter was surrounded by numerous nurses and doctors taking samples, putting cannulas in, asking lots of questions, which I struggled to answer. In the space of possibly an hour, it was confirmed, she had type 1 diabetes. Finally, we were admitted to the children’s ward, to begin the slow process of recovery and understanding what our new reality was.
Initially, the relief in getting the diagnosis outweighed the severity of the condition for me. Not that I honestly had any idea at that point what type 1 diabetes really was. Doctors and nurses explained things, we listened but I am not sure really how much we took in. I somehow managed to stop myself from googling everything under the sun and just focused on trying to make things as comfortable as possible for our stay.
Finally, after lots of information, listening, lots of learning, practising injections, very little sleep and a massive amount of “diabetes stuff”, your told it’s time to go home. I don’t know if I have ever been so relieved and scared all at once. It’s a little similar to coming home with your child for the first time. The panic and worry sets in, What do I do? How am I going to manage?
Living with type 1 diabetes
In the first week, I couldn’t quite work out what all the fuss was about, which feels awful to write down now. I felt like I was in this bubble. My daughter still had pretty high blood glucose, so we did some injections with the meals, we would wake up in the night to check bloods. This all seems doable, I kept telling myself. But the enormity and reality of trying to become a pancreas for your child hadn’t really quite kicked in. At this point, we still hadn’t quite figured out the whole management side of things, experienced a hypo (low blood glucose levels) particularly at night, started living our lives by alarms or weeks without an interrupted nights sleep.
I threw myself into the department of a dietician, my husband took on the tech side of things, and we both read a lot. We threw ourselves into all the practicalities, there’s lots of kit and organisation that comes with type 1. Then there are all the follow-up appointments with the amazing Diabetes Specialist Nursing Team (or DSN’s). So as a parent it can become quite easy to fall into solutions, organisation and planning, unknowingly pushing aside the other wonderful aspects of being a parent.
Like a bolt out of the blue, this thing comes into your lives.
You didn’t ask for it, you don’t know why and no one can explain why.
You can’t get rid of it, you just have to learn to live with it.
You can’t stop thinking about it, it takes up a huge amount of your day.
You wonder how your child will lead a “normal” life
You wonder if your family life will ever be the same again.
You worry all the time.
You have so many unanswered thoughts, questions, anxieties and this is just from my perspective as a mother.
But family life does go on
You learn how to manage the many aspects of the condition.
You learn about food and how to carb count.
You learn to live your life by an alarm.
You learn to live with interrupted sleep (it still sucks though).
You learn to live in a world of constant monitoring and talk about levels.
You still worry, but maybe a little differently.
A year on…..
I would broadly say that we are in a positive place living with type 1 diabetes now. We have a much greater understanding of what does and doesn’t work for our daughter and as parents feel more confident. But I’m not sure that we would feel quite this way without all the tech.
My daughter made the decision to move away from daily injections as she just couldn’t bear it and is now on an insulin pump. This pump connects to another wonderous piece of tech called a Continuous Glucose Monitor (CGM). This closed-loop system takes her blood glucose levels and automatically adjusts her insulin requirements every 5 minutes, predicting 30 minutes into the future. You may have read about this in the press recently. I believe they are being referred to as an artificial pancreas.
Now I appreciate just how damn lucky we are. We are lucky to have such an amazing NHS team who have supported and helped us every step of the way. We are lucky to have all the love and support from our family and friends. We are lucky to have all this amazing tech, which helps my daughter to feel happy and helps us as parents manage type 1 as best we can.
Our type 1 diabetes diagnosis changed us as individuals and as a family. We have had some really tough days but I feel that we are emerging from this experience with greater positivity, which has made us a stronger family unit, shaped some of our paths and highlighted the sheer resilience we can have.
So, to all of you living with any form of diabetes, and to all the incredible parents who have to become full-time medical carers, YOU ARE ALL AMAZING!
For more specifics and information on the actual day to day management of type 1 diabetes, see my earlier post on what is type 1 diabetes?