An open letter to parents who’s child has been newly diagnosed with Type 1 diabetes
If your child has been diagnosed with type 1 diabetes in the last twelve months, firstly I’d like to let you know you will be okay. It will feel incredibly overwhelming right now, but you will get there.
I’m writing to you, because along with many other parents, in some respects we’ve been where you are right now. For some of you it will have been the shock of your child going into life threatening diabetic ketoacidosis (DKA). For others it will have been the shock at your GP surgery as your doctor delivers the news you weren’t expecting or confirming your worst suspicions.
For us it was a baptism of fire as we entered the hospital with a very sick child in DKA and left with a bag full of needles and information on carb counting. There was also a sense of “What just happened? Did we really, nearly loose our child?”
But there is one way that our experience was very different from those who have just been diagnosed.. We didn’t have lockdown! My partner and I could both be in the hospital as our little one laid there fighting for her life, helped by this incredible group of doctors and nurses. We could both sit there and listen to the dietician as she explained carb counting. And then ask each other questions later as I seemed to hear different parts of the conversation to my partner. My mum could come visit us and give me that vital hug that is so needed at such times. We could see all the grandparents, who were desperately worried about their grandchild and, frankly, about the strain it was placing on the two of us. Yet it was still a hard journey to make. Nearly three years later and I can honestly say we are doing great. I won’t lie, there were some tough decisions to make and even tougher things to accept – most notably, that type 1 was part of our family.
So whilst I can say we’ve been in your shoes, there are some parts of the journey that I can’t. As you navigate this new journey through lockdown, with limited contact to friends and family, take this letter as the virtual high five that you might need right now. The main thing is to be kind to yourself. It’s not easy, but know you aren’t alone. It may not have been our first choice to be members of this ‘club’ but there is a large community of parents and professionals for you to link in with, including an amazing diabetes team of nurses, doctors, dieticians and psychologists. You might not be used to asking for help and it can be incredibly hard to do, but, trust me, don’t hesitate. There’s a brilliant bunch of professionals out there, ready to support you at every step of this life-changing journey.
On the flipside, if there is an upside to lockdown, then I guess you will be spared the nightmare of those early social occasions, such as birthdays and picnics when you stay awake at night worrying about how you’re going to cope with counting carbs and injecting in public. You don’t have to explain to relatives at parties that yes, your child can still have cake, but no you can’t just give it to them without carb counting and insulin. I mean you will still have to do this, but at a later date, when you’ve had time to understand it better yourself.
To the employers of these amazing parents.
If you have an employee who is going through this right now, know that it is all consuming. They are having to take part in a mandatory training course that can’t be deferred to a later date. They need to hit the ground running. There are finger pricks, needles, cannulas, sensors and a whole new vocabulary to be consumed. The monitoring of glucose levels is relentless. On top of that they have to work out why their child might be hyper (high sugars) or hypo (low sugars) both of which are equally worrying and need attention. They are also processing the reality of what they now need to do to keep their child alive. It’s a huge undertaking. Take a look at your company’s policies: see what support you can give. This could be parental leave and flexible working. In a year of a pandemic where we’ve all been figuring out how to adapt to rapidly changing situations, this is just another situation where your response can make a huge difference to the lives of your staff.
To the friends and family.
Know that when we can all meet, they are going to need your love and support in any way you can give. If you need help in knowing what to say, one thing you can tell them, is that they are doing an amazing job, because they are and they are doing it through a pandemic.
Finally, I know it’s a lifestyle change. One day you will feel you’ve got the hang of it and then the next day you might feel completely overwhelmed again. However, let me just end this letter quoting a beautiful book by Charlie Mackesy that might help on those tough days.
“When the big things feel out of control focus on what you love right
under your nose.”
(The Boy, the mole, the fox and the Horse)
All the best (you’ve got this)
From our family to yours
If you’d like to know more about the amazing work that is going on for young people with diabetes, then please take a look at JDRF
I write about caring for an amazing child who is type 1 diabetic as well as writing children’s fiction. This article is also featured on Medium
Email me at: email@example.com