How It Feels When Your Child Is Diagnosed With A Chronic Illness

I felt like I had a newborn baby all over again - scared and clueless, every minute something new was realised
Aliyev Alexei Sergeevich via Getty Images

Since diagnosis, just over a year ago, my eldest son aged 16 has injected himself over 2,500 times with a needle in his stomach or thighs. Out of the blue, over the course of four days he had a thirst that could not be satisfied, he went to the loo a lot and felt just exhausted. These were the only symptoms, and after a blood test at the GP we were sent straight to A&E.

He was diagnosed with Type One diabetes and I’ve felt like I’ve had a newborn baby all over again. We felt scared and clueless, every minute something new was realised, and it is the same all over again with T1.

It’s 24 hrs air traffic control scanning, it won’t ever stop. Every other illness or condition he’s ever had has come and gone, this one is here to stay. It’s a behemoth of a thing to hit during the teen years with hormones and GCSEs; take all the normal stuff Mums worry about with their kids and add on a life-threatening layer. I’ve been distraught and bereft but also laser focused and determined to deal with it all. For the first six weeks, I could not stop crying; I watched him walk up the road on his first day back at school, just 10 days after diagnosis and I could barely breathe; I just want him to be ok.

Having a child diagnosed with Type 1 is like being dragged out of bed at 3 am and being shoved into a rally car as a navigator with no warning or training. The pedal is to the metal straight away and the first blind bend downhill is hurtling towards you before you’ve even opened the instructions, which are bouncing around in your hands like a scorching hot potato.

They are your sole focus as they rely on you to survive. Do we have enough needles, insulin, hypo treatments, nighttime insulin, test strips, batteries? He ate the same as he did yesterday, so why are his levels so different? He needs to go to bed between blood sugar levels 6 and 10 to ensure good levels in the night, but what if he’s too low or high, will a correction bring him down or a snack bring him up OK? Getting up at 3am some nights to ensure it’s gone to plan is now routine.

Seeing his face when he tips into a low, sweats, goes cold and grey and sometimes can barely speak, is petrifying. Looking at every food packet and menu with a magnifying glass to see the carb content, weighing all carbs and working it out, adjusting for everything he eats or drinks. Dealing with highs when he feels dreadful, exhausted and drained. Days off school because he’s just been too exhausted or it’s all been too much. He also broke his leg two months after the T1 diagnosis, nasty spiral fracture now held together with five titanium pins. This, of course, sent his blood sugar levels raging and meant more time off school.

The only people who really understand are those who live this every day, the T1 community both face to face and those online, sharing with each other this T1 journey has been essential and much needed for both sanity, solidarity and understanding.

As a mum having a T1 child critically shifts everything and it is pretty much what we think about all the time, we must. Just when we think we’ve nothing left in the tank due to worry, anxiety, exhaustion, lack of sleep and frustrations, we carry on. And so, do our children, it doesn’t stop them, they just factor everything which takes time, thought and effort every single day.

Did I want this in our lives? No, and I’ve resented having to be part of this club I’ve been given VIP membership to. It sits awkwardly and unwelcome, but I must be friends with it and get to know it. But it’s coming along with me and how I do things, I won’t be dictated to or marched along by it.

A year on, I feel better, stronger and more confident. I’m still not there with full acceptance of this life-long condition and I had to fight back the angry frustrating tears last week when he told me his stomach was hurting from all the injections.

The moments of total glory we get are now magnified and more intense, such as when he passed all of his GCSEs with 6s across the board. He also got a yellow card back playing football recently, and I loved the fact he was there giving his all with his spirit and appetite for life still fully switched on. It means more, knowing he does all this with T1, it’s incredible, unbelievable and inspiring. He’s still very much the boy I know and love just as much as the day before he was diagnosed, and that gives me the drive and strength to do what is needed every day.