Will is the eldest of our three boys. He was born a perfectly formed little human, a whopping 4.48kg and all pudgy and lovely.
When Will was 8 years old, he was diagnosed with Type 1 Diabetes, an autoimmune disease in which the immune system attacks the cells in the pancreas that produce insulin.
A year ago our lives changed forever, Will’s life changed significantly- his future a little less certain, his body became an internal war zone, and a year ago our son didn’t die from a disease that, if left undiagnosed, would be fatal. We got lucky, we caught it early and that meant less damage to some of his vital organs.
Getting a diabetes diagnosis is extremely easy- a simple blood test with a small finger prick can give you an immediate diagnosis. It seems ridiculous to me that so many, particularly children, go undiagnosed or are misdiagnosed for so long. Most parents aren’t aware of the symptoms but thanks to growing up with my Mum, a Type 1 diabetic for 37 years, I was well aware and on high alert, and I knew he had it. I just knew.
In the weeks leading up to Will’s diagnosis he had started to wet the bed at night. He’s never been a bed wetter, and it was happening once or twice a night and in huge quantities. I was worried but noticed that he wasn’t drinking more which is usually an early symptom, he seemed otherwise well. I asked his teachers if he was going to the toilet during class, but they hadn’t noticed anything. I googled it and determined that he was anxious with starting a new year at school with new teachers.
Within a few days I’d decided enough was enough and tried to have him test his sugar at my mum’s house. He screamed the house down and totally refused the simple test. Over the years my mum has tested all of her Grandchildren, and they quite like the novelty of it. They queue up, fingers stretched out ready for the tiny prick to draw blood and determine their magic number. Will was usually the only one to refuse, diagnosed with a sensory processing disorder at 6 years old meant that he would often overreact to any small amount of pain.
I made him an appointment with a doctor, our regular family doctor was away so we had to use another, less familiar doctor. I had parent meetings at school, so my husband took Will. While in the meeting I could hear my phone vibrating but ignored it. Between meetings I picked up one of the calls, Brett had been ringing repeatedly to tell me what I already knew, “Will has diabetes. We’re going to the hospital now. I’ll get you on the way.” Will was screaming in the background.
I burst into tears. I knew what this meant. Will knew what it meant. Some families speak of those early days of being completely clueless about this disease, but both he and I knew that this would change his life and ours forever. Because I’ve seen it, I’ve seen it and we know it. I was devastated.
I left my job-share partner to finish the meetings alone while I raced outside the school to be picked up. The whole trip into the hospital was spent with Will screaming and crying, repeating over and over, “I can’t have diabetes. Please don’t take me to the hospital, I don’t want diabetes”.
The hospital stuff was way less dramatic than I’d anticipated. Everyone was very relaxed about the whole thing, and there was no sense of support from anyone caring for us in emergency. At one point Brett asked the doctor to confirm that it definitely was diabetes, she replied, “yeah, of course.” He then asked, almost hopefully, if it was Type 1 or Type 2. She scoffed, “oh definitely Type 1.” And then she laughed. Not a mean laugh, just a little noise that reminded me that this problem was ours. We were on our own.
The next few days were horrific. Will had to be held down by several nurses to be injected with insulin multiple times each day. I met with educators who bombarded me with new information and again reminded me of the awesome responsibility I was being entrusted with- keeping my child alive on a daily basis. Will wouldn’t allow me out of his sight which meant my tears were building up by the hour and I was close to losing it. He had the WORST case of cabin fever, and he became more agitated each day.
We were surrounded by support, but I was really alone and very, very sad. I can’t describe the deep, dark sadness that swallowed me up at that time. I couldn’t have a conversation without crying, and most people have a very limited understanding of the brutal damage this bastard disease can do so they couldn’t empathise the way I desperately needed them to.
My biggest regret of those early days was that I took three days off work. I was so worried about my job and letting people down, especially the children in my class, that I returned far too early.
Those weeks after his diagnosis was a mess. My husband is very chilled about everything, but his very casual attitude towards the huge responsibility this was felt like an abandonment, and I was left in charge of something I didn’t want to know anything about.
I remember visiting a diabetes shop and the women there were so supportive. They welcomed me with open arms, but I just didn’t want to know. I didn’t want to be in their club.
Diabetes means working hard to keep your child alive every single day. Children (and adults) die in their sleep from this disease. They suffer significant complications and don’t ever get a break from it. Will’s birthday wish last year was to have a day without diabetes, and I would have done anything I could to give that to him.
The sleepless nights have been a constant for us that past few months as we deal with Will’s continuous high sugar levels. We monitor what he eats and balance it with the correct amount of insulin, but things aren’t as easy as they were earlier on when he was diagnosed and still in the “honeymoon period”- a time where some of the pancreas is still working. We have to be careful not to give him too much insulin, as that can create dangerous lows. It’s a very precarious balancing act.
We argue with Will about food, about where to inject his needles, and to test his blood sugar levels. At times it feels like diabetes takes over our home, then we have months of not even noticing it’s presence. Overall, diabetes is a very unwelcome guest who finds it’s way into every part of your life. My handbag has become a pit of biscuits, jelly beans and needle tops. We find testing strips all over the house, and we can’t get into a lift or go for long drives without a kit of food and insulin to keep him safe.
It’s like having a newborn all over again. We have to prepare bags, wake during the night to check his levels, and when we sleep through we panic until we see him breathing in the morning.
The absolute biggest problem I have with this disease is the ignorance around it. People often get Type 1 diabetes- and autoimmune disease, confused with Type 2 disease- a very different disease. Often people can make changes to their lifestyle to improve their Type 2 diabetes. For Type 1 there is no cure at this stage. People make comments about how Will could just “get healthy”, or about how he will grow out of it. Often people’s reaction to his disease is, “oh my uncle/cousin/aunty has that”, and quite often they have Type 2.
I saw a clip last week of a child who was misdiagnosed and died from DKA- a complication of undiagnosed T1D. The comments were a mix of sympathy and ignorance. One comment, “sugar is a big problem in our society. We need to do something to stop more children dying so young”, had the T1D community enraged and ready to fight.
We have seen so many changes in diabetes care in the short time Will has lived with this autoimmune disease, and we are hopeful that the changes will continue to improve our life journey with our unwelcome guest.
We are very grateful for the work so many people do to provide support, education and funding for research. We have been inspired by so many people we have met, and moved by those who have lost their own children to this disease and have continued to battle for others, so that we don’t ever have to feel the pain they felt.
Most of all we are continually in awe at the bravery of these children who just get on with it. They don’t have a resistance to needle pain, they just have to live with it. They live with the fear of going too high or too low, and they power on regardless.
Will hates diabetes, and he will tell you. But he is so brave. So brave for a little boy who shouldn’t ever have to worry about any of this.
We look forward to a world that doesn’t involve Type 1 Diabetes, for Will and everyone living with this unwelcome guest.