There's having a really stressful full-time job, then there's being the parent of a type 1 diabetic child.
Being a parent is one of life’s great accomplishments. Teaching, nurturing, supporting and helping grow an actual human is a life-changing experience. Admittedly, it‘s absolutely terrifying but the love that is produced far outweighs any kind of drawback. That being said, stress is and always will be a component to parenthood; sickness, social interactions, schooling, work, the list goes on. Every parent knows that they must make peace with stress because it’s not going away raising a child.
And that’s if they’re healthy.
Now, look at a child who has diabetes. They have to manage their condition exactly the same way as an adult. Blood glucose monitoring, calculations, insulin injections, hypers, hypos, midnight alarms, and mood swings. Now throw in hormones, learning about yourself, how to behave in social settings, bullies, learning subjects, skills, and we haven’t even reached drugs, alcohol and working yet.
Despite the mountains of books trying to monopolise on the fear of expectant parents, there’s nothing that can prepare you for those little feet running around your house, demanding every second of your time, forcing you to realise that nice dress or jumper you bought is nothing more than colouring paper.. or worse, toilet paper.
Growing up is fraught with potential dangers already, but what about the parents? How do they deal with raising a diabetic child?
It is undoubtedly terrifying for a toddler to be faced with the daily management that is required to control diabetes. But it’s their parents who are also looking diabetes in the face, trying to learn a lifetime‘s worth of information and skills so they don't disadvantage their child more than they already are. People who may not have diabetes themselves must learn very quickly how to look after another human who is incapable of producing insulin.
As any type 1 diabetic will tell you, the disease is hard enough to manage for yourself as an adult. Imagine not having the disease, but instead having to manage it for someone else. Someone, who might not be able to tell you how they feel, who can't do calculations (I still can't), someone who doesn’t understand the implications of going too low or high.
Roughly, 1 in every 500 children has the chance of developing type 1 diabetes. But if one of their parents is diabetic, their risk rises sharply, to 1 in 20.
Unlike type 2 diabetes, the risk of developing type 1 is the same across both sexes and all socioeconomic groups.
You're twice as likely to develop type 1 between the ages of 10-14 than 5-9, and 10 times more likely than 0-4 years of age.
When I was diagnosed with type 1, I was 32 years old. My wife and I were about to plan on having children. Yes, it crossed our minds as to whether we should have children given the increased risk of passing down the 'faulty' gene. But what's the alternative? adopt? not have kids? It's a difficult question, but we still decided to carry on and try. Then shortly after my wife was diagnosed with breast cancer. Can you imagine what the conversation could be like if we had kids?
Hey kids! we both have life-altering (potentially shortening) chronic diseases but we had you anyway. We thought it would be funny! Life's tough - get used to it.
It just so happens, cancer has limited our chances of having children naturally, but do you know what? If we are lucky enough, we’re still going to go for it. It's not some weird narcissistic tendency to try and spread the dodgy seed. It's simply a case of 'our kid would be awesome, even if they do have a higher risk of chronic disease'.
My parents were lucky enough to see me only as an adult with type 1. I could already look after myself (sort of), and I was quick to pick up what needed to be done to give me the best chance of getting out alive with this disease.
Then I speak to parents with young children with type 1 and my eyes are opened and my heart sinks. Here are just a few of the things that impact the folks of a type 1 child;
The worlds largest learning curve - becoming a qualified doctor, dietician, mathematician, and personal trainer. Throw out your books on 'how to be a great dad', and in comes 'immunology and genealogy for beginners'.
Sleep - what sleep? - all new parents struggle with this, but T1 parents have the bonus of 3 am blood sugar checks, force-feeding, Insulin injections, CGM calibrations, infusion sets, and canulas. Now imagine doing these half-asleep, and wondering if you've given the correct amount of insulin (the wrong amount can result in a seizure or even death) - no pressure there then.
Food will never look the same again - all of a sudden, every morsel of food is fraught with danger. Will this french fry put their blood sugars up? Are they even supposed to be eating a french fry? How do we navigate the dreaded kids birthday party - cake, biscuits, sweets, chocolate - everything that will speed up the process of complications for my child is literally put on a plate and other parents are actively pushing them to eat it all because it's normal. I could just give them more insulin to make them feel normal, but then I have to deal with the rollercoaster blood sugars as undoubtedly I get the calculations wrong.
quick side note: the other kids horsing into the confectionary are also doing damage to their bodies - it's just taking a bit longer to show up.
Sports and other activities look very different - If you have a child with an insulin pump attached to their stomach, it's quite difficult to do gymnastics, or a contact sport, or swim. Physical exertion during an activity is also a potential minefield as your child doesn't know how much is too much.
Teachers are no longer even remotely qualified - you've just spent 5, 6, 7, 12 years raising this little awesome human being and you are finally getting confident in your ability to manage diabetes. Then you have to hand them over to a stranger who may have their best intentions at heart, but those intentions don't come close to safeguarding your child in the event of a severe hypo. "Sorry Jane, but your 4 years learning about pedagogy and how to blow a whistle in 16 different ways doesn't help my child".
The only advice is bad advice - you sit in the doctor's office and listen intently to what diabetes is and how to manage it. Then you go home and do exactly what you've been told and none of the advice works. "Why am I being told that my child needs to eat this to be healthy, yet its impact on their blood sugars is horrific?" (I'm looking at you fruit) - You start to google, and your world explodes with information that is convoluted and contradictory.
Is there a light at the end of the tunnel?
You're reading this from the perspective of someone that truly believes diabetes has made me a stronger, more healthy and altruistic person.
I certainly don't think diabetes defines me, but it is part of who I am, and if I show it the respect it deserves by treating myself with respect and taking care of my body and mind, then I am confident I will live a full and happy life.
What do I mean by respect?
Diabetes works best when I am being healthy. I eat a nutrient-dense low carb diet. I exercise daily. I avoid stress wherever I can. I am strict with my sleep and ensure I get as much as I need. Being diligent with my health is what my body wants and needs, and this makes diabetes easier to manage.
Set your child up for success
Just like getting them ready for university or helping them find their first home, setting your child up for success with their disease is vital.
There is a lot of fierce debate about allowing children to eat what many westerners consider a 'normal' diet. I am a westerner but after many years of research, trial, and error, I have found a western diet to be anything but normal. It certainly will never be considered normal in my household.
Why? because the food that is consumed is extremely high in refined and processed carbohydrates. Sugar is in practically everything, and it simply isn't supposed to be.
I'm sorry, this is not a popular choice, but if you let your child eat high sugar, refined carbohydrates on a regular basis, and they're a diabetic, you're setting them up to fail. It is doing very real harm on a metabolic level.
Of course, I'm not talking about a slice of cake once a year here. This is a strong statement and I say it with caution. Sometimes, you'll never avoid a hypo or hyper. For some people, they are predisposed to certain ailments and that cannot be avoided. But we know that chronically high blood sugars will lead to complications. We know that removing high carbohydrate meals will lessen the risk of going too high or low - especially overnight. We are simply mitigating risk.
Your child may experience a honeymoon phase - this is when the pancreas still produces some insulin. So, they need less injected insulin to cover food and blood sugars are usually a little easier to manage. You have the ability to prolong this phase by decreasing the stress on the pancreas. How? with strict glycemic control and as much time in target range as possible.
Your child needs to know this. They need to understand that life won't be easy but it's very possible to control this disease, and not be controlled by it.
Thankfully, you can now get sugar-free, low-carb cakes, bread, chocolate, you name it. So you don't have to worry about your child being outcasted by their peers for not eating jelly. Let's be honest though, this wouldn't happen, if the kids were educated on how bad sugar really is.
With the enormous amount of information available to kids these days, I honestly believe they will look back at us and say;
'I can't believe they ate so much rubbish. Why did they ever think eating a burger and fries was normal when it does so much damage?
Paying homage to the parents
From a type 1 diabetic to the parents of type 1 diabetics... thank you.
I can only imagine the stress and pain that you go through trying to support your children managing this disease.
I can only imagine how many hours of sleep you lose as you wonder how their blood sugars are doing at 2 o'clock in the morning.
I can only imagine your worry when you drop them off at school, knowing they have swim class that day or are going on a trip.
I can only imagine your panic the first time you see them get dizzy and stumble after going low.
I can only imagine your fear of looking at their blood sugars and not knowing how much damage it's doing, and if one day you'll be in the hospital for the last time.
Diabetes is a very real and dangerous disease. It requires round-the-clock vigilance and discipline. It is relentless and unforgiving, but it can be controlled. It can be tamed so it listens to you and obeys your wishes.
Your child will grow up to be an amazingly diligent, motivated and patient person. 100 years ago we would have not lasted more than 12 months. We now have a lifetime to be thankful for what we have; for what we can give, and for what we have been given.
We would not be here without our parents.
Believe the hypo