It’s now been more than seven months since my three year old, Sidney, was diagnosed with type one diabetes. It’s something I notice myself referring to in my posts and the support of my “virtual” friends on Instagram has given me strength at some difficult times. The last week has been diabetes week here in the U.K. and I wanted to do my bit to spread awareness of the condition. This is a bit different to my usual yarn related post!
If you miss it the first time round, or want to recap, you can read my post about the aftermath of Sid’s diagnosis HERE.
Type one diabetes is an autoimmune condition that absolutely anyone can develop. It’s thought that at some point he had a virus that his body overreacted to and resulted in it killing his pancreas, meaning he no longer produces insulin. It’s irreversible and permanent. As a parent I felt a huge amount of responsibility. That it was my fault; something I should have noticed earlier, avoided or reversed. These feelings were so overwhelming in the beginning. I wanted to scream in the face of the overly kind nurses who’d try to sooth me with a mantra of “it’s not your fault”. I get it now. I do feel more separate and more objective, but I think I’ll always have a nagging thought that I could have done more to prevent this.
I’ll always remember the first time we took over the insulin injections from the nursing staff. Piercing my child’s skin with a needle as he looked at me sad and bewildered, unable to comprehend that this was how his life would now be. Four injections a day. Eight finger pricks. Invasive medical monitoring and treatments everyday, forever. This brought with it enormous feelings that I still find hard to articulate. That leap from the normal to the abnormal.
But time has made these feelings lessen. As we adapt to our new normal. All those injections mean we have all adapted very quickly to our new routine. Sid is marvellous. Never refusing an injection or kicking up a fuss. This, in turn, makes it just part of our day. A little aside to the usual running. No longer a huge mountain but just a tiny detour. This is the same with his finger pricks. As he starts to learn his numbers it’s becoming quite a fun part of the day to see him read his own glucose levels and understand if they are higher of lower than expected.
I’ve found the further into this journey we go the more confident we become at understanding his readings and adapting his treatments. We are becoming the experts in Sid again. It feels like regaining some control, demystifying and, in turn, demedicalising it somehow. It’s great. But this does mean that we had begun to speak the language of diabetes, of blood glucose and ketones, and it’s a language that a lot of our family, friends and colleagues don’t speak. It can feel alienating and separate. Trying to explain what I’m talking about, or the implications, of it can be quite exhausting and upsetting. This often leads to me not talking about it, which then doesn’t help anyone to understand it. A vicious circle. So whenever anyone asks “how’s Sid?” I tend to clam up. To not answer or to just say “oh he’s fine”.
It’s been interesting, and at times upsetting, to see the reactions of our friends to his diagnosis. I realise now that what I have needed most from them is a sense of reality. To know that there is life outside what we are living with. But at the same time to feel that they care about Sid and his experience. This opportunity to talk about diabetes helps their understanding of the language and it makes it so much easier to talk to them when I’m struggling. A couple of people who I have always held dear haven’t known how to talk to me about Sid and this has created a gulf in our relationship. One that I haven’t got the energy to bridge anymore. Maybe this experience has given me a harder heart. Or just given me the space to assess what my expectations of a friend are.
It’s hard to give advice to other people who find themselves on the outside of a diagnosis like this but I would say is be present. Keep in contact with the family of those going through this. Keep texting, ringing, popping round even when you don’t get a response. Remember that they have something else going on in their life that seems so big, so overwhelming. They need you to be the better friend, just for a little while, until they come out the other side. Take time to understand the jargon and the treatment. Most of all be kind!
This experience has also strengthened so many relationships. Friendships that I hadn’t realised meant so much to me. They were the ones keeping in contact, giving me practical support and not letting me push them away. They are the people now that have taught me so much. Thanks guys! Your support has built me up and kept me going. I hope that I have the chance to repay you.
After some unstable times with persistently high blood glucose levels and inexplicable lows Sid is about to embark on a new treatment, an insulin pump. This is a machine the size of a mobile phone that he will be attached to 24/7. It delivers insulin a little bit at at time, rather than in a burst like the injection. This means it should be easier to tweak and adjust in order to gain the best control. Of course it’s not a functioning pancreas! He’ll still need his finger pricked at least 8 times a day. We’ll still need to count the carbs in each meal and tell the pump what insulin to deliver. We’ve struggled with the decision on whether he should start pump therapy. Not least because it is a permanent visual reminder of his condition. But, at this stage of his journey, we feel the benefits outweigh the drawbacks. Of course, it means more impenetrable jargon and I’m starting to feel overwhelmed with information, like I did when he was first diagnosed. We have four half days training before we’re let loose with the pump in July. I’ll let you know how we get on!
Thanks for reading! This post has really helped me to order my thoughts and realise how far we’ve come since November. I’m definitely feeling more hopeful and like diabetes doesn’t define our lives or how we live. With Sid starting school in September I’m sure we’re not over al the hurdles yet but we’re feeling equipped and supported and that’s half the battle!
If you have any questions about type one diabetes I’m always happy to try and answer them. I can also recommend JDRF as a source of information.