by Emma Chow
I met Steph eight years ago when we worked in the same patisserie. I didn’t know back then that this wonderful woman would become my best friend and the mother I admire more than any on this earth. Today, Steph is only in her mid-twenties and has three children with her husband Andrew: 5 year old Charlie, 4 year old Grace and one year old Billy. Amongst caring for her young family, Steph is undertaking studies to become a midwife. They live in suburbs of Melbourne. Last year, their family discovered that Charlie has Type 1 Diabetes.
Illnesses, allergies and conditions in children such as Asthma, Anaphylaxis, Asperger’s and Autism are rapidly gaining or already have strong awareness and understanding in society. However, type-one diabetes is often not well understood. Diabetes is an auto-immune condition in which a person’s own immune system destroys the cells of the pancreas, which produces insulin. Insulin is the hormone which regulates the amount of glucose sugar in the blood. Unlike Type 2 Diabetes, which is caused by a combination of genetics, environmental and lifestyle issues, Type 1 Diabetes is not caused by poor diet or lack of exercise and there is no cure or preventative. To manage the illness, insulin must be injected into the body several times day. The onset of Type 1 Diabetes is often sudden with symptoms of weight loss, tiredness, blurred vision, listlessness, excessive thirst and urination.
There are so many things I could say here about Steph: her incredible resilience in the face of hardship; the always loving and patient attitude towards her children no matter what they do; that she always offers to help someone else even when her hands are full. No matter the nastiness and judgement that she is often faced with, from people in all different parts of her life, Steph always handles the situation with grace and tolerance, where I would be tempted to put a brick through the person’s head. The things I’ve seen her put up with.
Maybe I’m biased. I interviewed Steph so she could put into her own words her family’s experience of having a child with Type One Diabetes.
Steph:
I have been truly blessed with three beautiful kids. Billy our youngest is a big boy for his age. He likes to be a little show pony and often has the kids and their friends in hysterics, but at the end of the day he loves a good cuddle.
Grace, our daughter has a quiet strength about her. She is kind and compassionate and tells us she wants to grow up and be a nurse. She was such a needy baby and toddler; I rarely slept and she was always attached to me, but this year at kinder you wouldn’t know she is the same child.
Charlie our oldest is so smart and inquisitive. He is also very loyal and loving to his friends and family. He generally is a gorgeous, good natured little kid and his resilience when faced with adversity has amazed us.
When you found out Charlie had Type 1 diabetes, what were your first thoughts?
Charlie was diagnosed at our local GP’s office. He had been “off” for a couple of weeks and had started drinking and peeing a lot. I knew the symptoms of diabetes and took him hoping we were ruling it out. I bundled the three kids up and went to the GP. She seemed relaxed and said we would do a urine test.
When she left the room and didn’t return for 15 mins I knew something wasn’t right; the grim look on her face when she returned was also a clear indicator. I remember her saying “I’m sorry to be the one to tell you this Steph, but we don’t need a blood test to confirm, Charlie has type 1 diabetes and you have to go straight to the Children’s Hospital.” It was shattering to hear but it was something I think I already knew in my heart of hearts. I rang Andrew in tears and had to shatter his world as well by telling him our precious baby boy had a lifelong auto immune disease. I remember fielding questions through the phone to the GP: “How did this happen?”, “Did we cause it?”
I also remember the first test and injection. Treatment began as soon as we arrived. Charlie was terrified at what was happening to him. I remember crying all the way home at around 1am to feed baby, my heart breaking for Charlie and thinking of the simple things like play dates and sleep overs. What do you do at Easter time and birthdays with all the chocolate and birthday cake? Not to mention the relentless testing and injecting regime. I was back at the hospital with no sleep by 4am for his next test. The following few days of education and the back and forth to hospital are a bit of blur, but I think you go through a period of numbness and shock, followed by a grieving process. You finally come to some level of acceptance and try to get by the best you can.
Describe a day in your family’s life.
This would be a typical Friday, the worst day of the week.
I wake up around 6am, do a test on Charlie to ensure he isn’t ‘hypo’.
[Hypo is often short of Hypoglycemia, which an emergency situation where the blood is abnormally low in glucose, otherwise known as “low blood sugar”. A true hypo reaction can result in impairment to brain function, seizures, coma, and in the worst situations brain damage or death]
Get Billy up. Prepare breakfast for three kids, inject Charlie and sit him down to eat. Prep lunch boxes for all. For Charlie this means measuring out and carefully calculating carbs, ensuring there is food he will eat that particular day in there and that there is enough food for snacks, lunch and any low blood sugar emergencies. Pack up nappy bag, kid’s bags; for Charlie we HAVE to make sure there is his testing kit, hypo lollies and a snack for afternoon tea in his bag.
Clean up; put on a load of washing; chase down kids to dress for the day, race out the door by 9. Take Charlie to kinder and stay to give his teachers a run-down on his blood glucose levels and mood.
Race home to get Billy down for a hopeful hour nap. Hang washing out; wake Billy up and drive back to drop Grace at the Kinder at 11.
Do the food shopping or take Billy to the park during our hour alone.
Go back to kinder and do Charlie’s injection so that he can have lunch.
Go for a drive for an hour so Billy can sleep or stay and help out at kinder, which is often necessary.
Go back to kinder and pick up Charlie at 2:30, de-brief with his teachers. Wait around for Grace a till 3.
Drive home, feed kids an afternoon snack and then start preparing dinner; hard work with a toddler in the kitchen. Get Charlie’s injection prepared, serve dinner, administer injection and sit and deal with the exhausting and frustrating repeated ‘I hate this, I’m not hungry’ for the next 1 or 2 hours
Distract tired kids while I clean up; bathe the older two, settle them in the play room while I bathe baby and get him into bed.
Test Charlie’s sugars; give him supper to get him through the night; inject him with his 24hr lasting insulin; put older two to bed.
Clean up the bomb site house; catch up on housework and emails and any other bits and pieces. When Andrew gets home between 8-10pm I either go for run or have a glass of wine.
Test Charlie at 10, and if it’s a decent level to get him through until 2am, go to bed.
Feed the baby around 1, get up and test Charlie at 2am, re-settle baby at 5am, get up at 6 and start all over again. Sleep is broken and I get it where I can, when I get it.
What kind of behaviour has Charlie exhibited since diagnosis?
Charlie’s behaviour has been affected by the diabetes because his blood sugar levels fluctuate so much. When he is hypo he is usually tired, angry and confused and will often cry and scream for food because that is exactly what his body is screaming for and when he is hyperglycaemic (high blood sugar) he often finds it hard to concentrate and is on edge and angry.
Charlie sees a psychologist because having diabetes has caused him problems. Firstly he has anxiety about the injections, and he will often go hungry for an hour or more just to try and avoid the inevitable lunch time injection or will ask me for up to 3 hours before his 7pm injection, ‘how long until 7 o’clock?’.
In the beginning he had to be held down to inject because he needed the insulin desperately. He is also angry and confused about why this has happened to him and it can be disruptive to the whole household. Managing Charlie’s behaviour can be just as exhausting and as much of a juggling act as managing his medical needs.
What kind of negative reactions you have received from other people?
Charlie’s Kinder teachers have been understanding and accommodating where possible. However the source of a lot of our issues comes from having him outside of our care.
Within the education system Type 1 Diabetes does not get much recognition. The Department of Education’s stance is that testing and eating can be supervised by teachers and there is no mandatory education surrounding diabetes if you happen to have a child with it at your school. The problem is this doesn’t take into account the child’s age and that they may not be doing their own testing or management. It’s caused problems regarding Charlie requiring insulin at lunch time at kinder, as there are no clear guidelines on where the liability sits if something goes wrong after his injection, therefore teachers are very hesitant to do any injecting.
Also because there isn’t much of understanding about Type 1 diabetes in the general community, Charlie is often excluded from play dates and parties. I do hope that as Charlie grows towards his teenage years that there is more of an acceptance and less ignorance regarding the disease.
I’ve also had stares in the supermarket when Charlie is having a melt down over not being allowed foods he used to have as a treat. Other times it’s a tantrum over being forced to drink a bottle of water; his sugars are so high and his body is screaming at him for hydration. It often gets put down to ‘bad behaviour’ but there is a clear difference in behaviour when his sugars are in range and when they’re not.
Please describe how Grace and Billy have reacted in relation to Charlie’s diabetes.
Grace has had a tough 18 months, she has felt left out and times and early in the piece started bed wetting. I feel for her, as she got a new baby brother and became the middle child which was unsettling enough. 5 months later to be pushed aside for Charlie’s needs was hard. Charlie ended up in hospital a lot so the kids would spend time on the ward with me so Andrew could work. I would hand Billy and Grace over to Andrew exhausted at the end of the day to stay for another sleepless night with Charlie and I would have to leave a screaming Grace. She is so great now though we haven’t shaken the bed wetting.
Billy was just a baby when Charlie was diagnosed. I had massive mother’s guilt handing my baby over while I dealt with my other child’s needs. Once, Charlie had gastro which had also ripped through the other 4 of us. Charlie was admitted to hospital, put on a glucose drip. I had to stay over, so handed over my sick 6 month old to my husband. He ended up very unwell and I cried silent tears at the hospital, beating myself up for not being able to be there for him too. He is such an easy-going little kid though. I’m sad that his baby months were a bit of a blur but he is a very resilient toddler as a result.
What surprising and positive reactions have you had from other people?
Charlie’s Kinder teachers have been amazing, they are so kind and nurturing; they have done everything they can from the day he was diagnosed to take care of him and make sure kinder is a safe and welcoming environment for him. My close girlfriends have also been amazing; always there to listen to me carry on about the hardships and daily hurdles and also willing to help out with the kids from their general care to researching diabetic friendly recipes and beyond.
What are some other health issues related to Type 1 Diabetes that people often don’t realise can be an issue?
When a normal generally healthy child contracts gastroenteritis, they’ll probably need a lot of rest, fluids, toilet trips. For Charlie it is a guaranteed trip to the ER. The reason behind that is a diabetic child is given insulin in a lump to try and cover the food eaten in a day, if vomiting suddenly occurs then there is going to be too much insulin hanging about in the body verses the food that is going in/being able to be kept down, therefore their sugars tend to plummet and stay dangerously low. One would think you would hold back insulin in order to combat this but if you don’t administer enough insulin while a diabetic is sick then then they start to go into another life threatening situation where they build ketones and go into Diabetic Ketoacidosis which untreated by insulin is also fatal.
[DKA occurs when there are extremely is extremely high blood sugar, caused by insufficient insulin in the body. As the body is unable to use glucose for energy, it burns fat instead causing an accumulation of ketones, a dangerous chemical substance.]
There are serious long term complications if sugars remain high or if a child has diabetes for a long time; there is risk of kidney failure, nerve damage to the hands and feet and possible amputation, damage to the fine blood vessels in the eye resulting in blindness.
What is the number one message you would like others to know about living with a child with type-one diabetes?
It’s bloody hard to manage and we did not cause it.
There is too much association with Type 2 Diabetes and some of the questions that get asked are coming from a good place but to be honest can be quite insensitive:
“Did you feed him too much sugar?”
“Well he doesn’t look over-weight.”
“He only has one test a day, get over it.”
Managing Charlie is 24 hour job; every meal, test and injection is planned for. We also have to take into account activity levels and emotions as they affect blood glucose levels. We leave the house packed up as if we are staying the night, his kinder bag is full of emergency supplies and when he is sick, I can be testing hourly overnight to make sure he doesn’t slip into a coma and have a fit.
It is relentless and yes he may look like any other kid but that is because of the support team around him that work day in and day out to keep him healthy and safe. Don’t just think of the finger pricks and injections and underestimate the work a mother and/or father of a diabetic child do.
Looking towards the future, realistically what would you like your lives to look like 10 years down the track?
I’m always going to hope that in the future whether it be near or distant that there is a cure for Charlie, he deserve a chance at diabetes-free life. Short of that happening, I am just like any other parent hoping he is happy and healthy and enjoying school with a good friendship group.
If you would like to help find a cure for juvenile diabetes, Juvenile Diabetes Research Foundation (JDRF) is the largest charity supporting Type One Diabetes research in the world.
Further Information:
1. They have made a video entitled ‘Believe’ which is very worth watching. You will require tissues.
2. Another film worth watching is entitled ‘One Day’ about a 7 year old Grayson Schnellhardt and his parents as they cope with type 1 diabetes. More tissues required.
More Curiosity Without Judgement Interviews, here.
