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.
However, little did I know 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 cup of water, would wake in the night to drink more 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”, you are 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 set 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, or really 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.
What was whirling around my head
Like a bolt out of the blue, this thing has come into our lives. You have so many unanswered thoughts, questions and anxieties. These are a few of the things that whirled around my head from my perspective as a mother.
I never asked for this, why has this happened to us?
But yet no one can explain why.
This will never go away, you can’t get rid of it, you just have to learn to live with it.
I can’t stop thinking about it, it takes up a huge amount of your day.
How will your child lead a “normal” life?
Will our family life ever be the same again?
You worry all the time.
But family life does go on
Over time you learn how to manage the many aspects of the condition.
Within this huge journey of education and understanding, you gain confidence again around food, how to carb count and deliver insulin requirements.
Suddenly you become more comfortable in your role as a full-time medical carer.
Living your life by an alarm becomes second nature and the inevitable lack of sleep becomes more of a normality (although it still sucks)
There are fewer complications that throw you a curveball and you learn to respond calmly and with a little more understanding and knowledge.
You learn to adapt to a world of constant monitoring and discussion around diabetes.
The worry is still there, but maybe it shifts and is a little different.
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. But also as parents and carers, we feel more confident in our decision making. 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. This was mostly prompted by the fact that she just couldn’t bear it. SO now we have moved to a very smart insulin pump. This pump connects to another wonderous piece of tech called a Continuous Glucose Monitor (CGM). This closed-loop system means that the pump can read her blood glucose levels and automatically adjust her insulin requirements. It also means that that background insulin can be adjusted through predictive technology.
Now I appreciate just how damn lucky we are. We are lucky to:
Have access to lifesaving medical supplies and such an amazing NHS team. The PDSN team have supported and helped us every step of the way.
Be surrounded by wonderful family and friends who are always there with love and support
Have all this amazing tech that monitors blood glucose levels and delivers insulin. All of which helps my daughter to accept her daily responsibilities. But it also 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. This experience 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 our actual day to day management of type 1 diabetes, see my earlier post on What is type 1 diabetes?