Six years ago, I took my 8 year old daughter to the doctors concerned that she had lost weight, was incredibly grumpy and was eating and drinking a lot more than ever before. My doctor said she was probably just having a growth spurt and not to worry. As we walked out he said we could test her blood sugar levels you want. Tilly's blood sugars were 29.8. (A ‘normal’ persons blood sugars sit between 4 - 6). The nurse offered me a cup of tea and a hug - I still had no idea what this number meant and then the doctor suggested we call an ambulance! I had no idea what Type 1 diabetes was and asked the doctor how long this will last!
We spent the next 6 days in hospital in complete shock. We had moments when we were all positive and thought - this will be fine, we can do this. And moments where we decided that this was in fact impossible and with three other children and busy lives there was no way diabetes could fit in our family. Too bad. It had moved in and we had to get on with it…
I remember the doctor telling me that going home was going to be a lot like leaving the maternity ward with your first baby. You had no idea what to do to and how to keep your own child alive. I remember leaving the hospital to go to the supermarket. Hospitals do a terrible job of gluten free food and as Tilly needed to eat every four hours with her new needle schedule, I needed to find something she would eat without a fight. All four of our children have Coeliac Disease - an autoimmune disease that means that we all have a strict gluten free diet. When I was told that we all had to be gluten free for the rest of our lives, I remember the shock. I was too scared to feed them anything. We ate only popcorn and nectarines for two days. So now I was wandering the supermarket aisles, searching for our favourite GF foods but this time having to check all the packets for the carbohydrate levels. As if learning about insulin and needles and pancreas’s wasn't enough - we also had to learn about carb counting and had to insure that we had the right amount of food to insulin ratios. It was all too much. Hot tears wear running down my face and they wouldn't stop. I cried all day. Not sobbing just hot water streaming down my face. Like something had burst. My face was leaking. Tilly asked me what was wrong. I told her I was really tired and had a lot to get my head around… Not that I was devastated that her life would never be the same and I was searching for answers as to how and why this had happened to us.
Our specialist was outstanding and offered us his personal cell phone number so we could speak directly to him as we wadded our way through the early days. We phoned him every four hours, twenty-four hours a day for the first few days! He retired a few months later which may have been because of us!
There is no magical formula when you have a child with Type 1 diabetes and it actually never gets easier. Everyday is different depending on the level of activity, the food eaten, the mood (stress can change your BS levels), the regime changes. And it never stops. Never. Not for Christmas. Not for birthdays, not even so you can sleep through the night.
Three years ago I was concerned about my 6 year old son who suddenly started sleepwalking and spending half the night in the toilet. A quick finger prick while he was asleep confirmed my fears - his blood sugars were also in the high twenties.
Back to the hospital again! It was easier this time as we had the benefit of knowing what all the words meant that the medical teams speak of. We new what insulin was and how it worked. What was harder was knowing that another one of our gorgeous kids was going to have to deal with all the heartache, pain and stress that we had come to know of T1. We were devastated, again. I was angry. One Type 1D kids was too much, what the hell had we done to deserve two!
The worst bit was telling Tilly. I told her that I thought Felix had developed T1D and that we were going to take him to the hospital to have it confirmed. Her plea broke my heart. “Please just let him have one more day Mum, take him tomorrow, let him have one more day where he can eat without thinking and he doesn’t have to worry about everything he does”. Mark and I felt sick as we drove out the drive and to the hospital, mostly in silence. Our poor wee guys life was about to change forever.
Felix was brave and calm and even excited about some parts of his new disease. (He said - “cool can I have jellybeans now like Tilly!”) The rest of the family was bruised, we felt like we were being kicked. Constantly. And it hurt.
And then just as life was looking like we had a handle on it - like we had dealt with most things T1 could throw at us - highs, lows, school camps and sleepovers. We were starting to relax into it, exhausted from the daily proceedings but confident that we knew what to do. Then out of no where my 14 year old was diagnosed. As if being a 14 year old girl is not hard enough, Ruby suspected she had T1. She had lost weight and had been feeling terrible, along with the standard hungry and thirsty symptoms. She had been really sick with a flu virus ( all three had had a bad virus in the weeks before diagnosis)
Off we go again! Convinced that as diabetes ‘know it alls’ we could pop into the hospital for the day and be gone, we were wrong. The team rightly pointed out that each child was completely different and that it was going to take us several days in hospital to get Ruby’s regime sorted. Ruby had watched diabetes for 4 years. She new how this disease worked and so was under no illusion that this was going to be ‘fun’ or ‘easy’. She asked me when she was going to feel normal again - I told her the truth. Never. She had a new normal now. The days of being carefree and not having to think about everything she ate, drank or did were over.
When you have a child diagnosed with Type 1, the whole family is diagnosed. Everything changes. Meals take longer, going out is a mission, bed time is unbearable and everyone suffers. The older children went from feeling terrible for the two younger ones and what they were dealing with and then resenting all the time and attention that the diabetics were getting. The mood swings and tantrums that can come with high blood sugars were often seen as us letting them behave badly! Trying to get 3 children to test their blood sugars 6 times a day each is 18 potential arguments. These kids stab their finders with needles over 50 times each week and inject themselves more than 1500 times a year - its understandable that sometimes they don’t want to.
My kids are amazing. They deal with life and death situations everyday. They can calculate carbohydrate levels of any packet and can do the maths to work out their insulin ratios. They get frustrated that other kids lives are so simple. They get angry at adults who say dumb things. They are exhausted from the amount of time that is taken up each day with needles, finger pricks, measuring food, reading packets and just generally checking in with how they are feeling and what that might mean. They have to do all this just to stay alive.
Life is hard with T1. 24 hours a day hard. We cannot leave the house without needles and juice boxes and jellybeans and insulin. There is barely a night when someone doesn't need a low treatment in the wee small hours.
My husband is amazing. The perfect diabetes parent. Calm, patient and very good at maths. I am none of these things but I have other talents! I am good at being positive when all hope is gone. I am good at finding the funny bits in our ridiculous lives. I am also very good at being grateful. Grateful is the only thing that keeps me going. Grateful that I have 4 fabulous children - even if only one has a working pancreas! Grateful that my husband and I are the perfect opposites to get through this medical mayhem. Grateful for the other kind and honest parents I have meet who are also battling everyday with Type 1 in their lives. Grateful for the wonderful team of professionals who know so much and try to understand. Apart form a cure, I wish that T1 had a different name that differentiated it from Type 2 diabetes. They are not the same disease. Type 2 Diabetics are resistant to insulin. Type 1 is an auto immune disease where the body does not produce any at all. We are often asked is that the bad diabetes. There is no good diabetes. But there are thousands of precious little children dealing with a disease that they have done nothing to contribute to. They just got unlucky in the genetic raffle of life. They look normal; friends, family and teachers often forget just how much these kids are dealing with. Everyday. All day. More understanding is needed. If my kids had cancer they would have been given beads and a trip to Disneyland. Every three months we get a new box of needles and some insulin and away we go. Gratefully.