The moment when Emma Oliver’s worst nightmare, of her son being diagnosed with Type One Diabetes, became a reality will stay with her forever. What she describes sounds terrifying.
Having being diagnosed with Type One Diabetes herself at the age of 21, she knew what came next, and here she explains the absolute devastation, anger, worry and guilt she has been through since.
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9th January, 2020. The day my eldest boy’s life changed forever.
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As I stood in the GP surgery looking at the result of the blood glucose test the doctor had just done on my then six-year-old son O, I turned my back on him as tears began to stream down my face because in that moment I knew that he would never know his life again as he knew it right then. Her words “I’ll call A&E and tell them you’re on your way” remain etched in my memory. His blood glucose levels were 28. A “normal” person’s are between four and seven.
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I was diagnosed with Type One Diabetes when I was 21 and my worst nightmare had now become a reality. One of my children was now also Type One diabetic.
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The four days and nights in hospital that followed are as vivid now as they were then. Doctors and nurses pinning O down while he screamed and begged them not to inject him with insulin. We were lucky we caught him early, they said. He was unwell – pale, lethargic and had been wetting the bed, but didn’t have any of the typical symptoms. If we’d had left him a few more days, a week maybe, he would have ended up in DKA (Diabetic Ketoacidosis), a life-threatening condition that happens when there is a severe lack of insulin in the body and it starts to shut down. Despite the diagnosis of a lifelong, chronic autoimmune condition, we felt lucky that we hadn’t lost him.
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I was devastated. I also felt angry. I mourned for the life that he had before his diagnosis. The life where he didn’t have to think about every little thing he eats and question whether it’s worth eating if he has to do an injection; the life where he could go and play with his friends without worrying about feeling shaky if his blood glucose levels drop; the life where he could go to a birthday party and not need his mum or dad to stay.
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O really is a legend. He is so brave and so resilient. He rarely complains. He just gets on with it. He stood in front of his whole class just a few weeks ago and explained why he wears a pouch around his waist that contains a mobile phone and how he uses that phone to scan a sensor on his arm which basically keeps him alive.
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Type One Diabetes is there 24/7. There’s no break from it, ever. But you can choose to let it take over your life or you can choose to control it. It’s a constant rollercoaster of decisions. All day, every day. I often feel exhausted for no reason other than having to make sure O is okay but I carry on, because you have to and you can’t let it beat you. Parenting is hard at the best of times but when you have to make life or death decisions constantly, it becomes exhausting. I’m lucky I have my husband to share that with.
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There are 42 factors that affect blood glucose. Not all affect O now but the main ones are the weather – if it’s hot or cold, illness and medication, lack of sleep, exercise – whether high or low impact, food and the timing of insulin, and stress. Some days involve all of these and it only takes one factor for it to make the difference between a good day and a not so good day.
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Nights are hard. I fear O’s blood glucose levels will drop so low during the night that he won’t wake up. This is an anxiety that I’m not sure will ever go away. I check him before bed and he has an alarm that goes off if he drops below a certain level but I often wake in the night and go scan him to put my mind at rest.
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Please don’t say the word “stable” to someone with Type One diabetes. It is impossible to ensure stable blood glucose levels. It’s just about trying to control it the best you can. O has achieved 100% in target (meaning his levels are between four and 9 for 24 hours) once since he was diagnosed. We did a celebratory dance and took a photo for evidence.
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People say to me that it must be easier for O because I am type one myself so I “know what I’m doing”. I don’t see it like that. In fact, I think the opposite. His dad is much more calm and relaxed than me and I often wish I could be more like that.
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I wish people would think twice before they say things like “He can’t eat sweets can he?”. If you Google it, you can find out the basics easy enough. He can eat whatever he likes so long as we calculate the carbs to work out the dose of insulin needed.
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Because I spent a lot of my younger years not really looking after myself and at times refusing to accept the condition, I am determined for my son not to go down the same path.
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I worry. A lot. Not just about things now but about everything that could go wrong in the future. When he reaches his teens, if he’ll just stop injecting insulin because he no longer wants to deal with it, will he be bullied? Will he go blind? Will he have to have an arm or leg amputated? I am a control freak. I can’t deal with uncertainty.
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I live every day wondering when my youngest son will be diagnosed with Type One. It’s always in the back of my mind. Every time he asks for another drink, every time he goes to the toilet three times in half an hour, every time he has a growth spurt but it looks like he’s lost weight. My brother, who is two years younger than me, was diagnosed at exactly the same age I was diagnosed. So, I am waiting for the time to come when my youngest turns six and I am waiting for the symptoms to show.
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There’s the guilt about the attention you show the type one child. Because you have to constantly monitor him, you have to ask him to do a blood test, scan himself, do an injection, have a glucose tablet. So, then you try to ensure the other child is also getting the attention he needs and craves. You feel split in two a lot of the time but then that’s parenthood anyway isn’t it?
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I wish it all didn’t revolve around food. I wish we could go back in time when eating out in a restaurant meant me just figuring out (or guessing) how many carbs I was eating and giving myself the insulin I needed. Guessing how much insulin O needs for three slices of pizza and an ice cream sundae isn’t fun. And then he’ll leave the crusts, which I’ve included in the estimation, so it’s then a case of digging out a biscuit to replace the crusts and make up the number of carbs he’s not eaten.
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One positive in all this was discovering a family who have a daughter a similar age to O who was diagnosed with type one earlier this year. We first made contact through a Facebook support group for parents of type one children and we thought it would be good for the kids to meet. O has found a friend who he can be “normal” with but who he can also compare blood glucose levels or talk about how much they need to inject for a McDonald’s cheeseburger and fries. And I have found a friend with whom I can swap messages about how we’ve tried a new pasta that didn’t make blood glucose levels spike or how we survived trick or treating and are so relieved Halloween is over for another year. There are days when an exchange of messages is what has got me through.
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I realise that a lot of what I’ve written isn’t positive. I must admit there aren’t really any positives to being type one, besides maybe ride access passes at theme parks (queueing for an hour or longer isn’t an option if your blood sugars drop and you need to treat them urgently). If you ask O he’ll say, “Well, I get to eat biscuits and play with Lego at school when I’m hypo”. Despite the challenges we face on a daily basis, it has taught me to be grateful and that things could be worse.
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The staff at O’s school and his childminders have been a tower of strength for us. The support they have shown has been incredible and has made such a difference to our lives. We are lucky that we have our family, as well as a supportive paediatric diabetic team, not to mention our new friends who understand what our life involves on a daily basis.
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As we approach O’s second “diaversary”, I honestly couldn’t be more proud of him. He is a type one warrior.
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HELPFUL RESOURCES:
NHS: www.nhs.uk/conditions/type-1-diabetes
Diabetes UK: www.diabetes.org.uk
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** ‘But why can’t some people walk?’ ‘But why do people die and are they just sleeping?’ and “But why do adults drink beer and what does it do?’ are some of the tricky questions I tackle in my debut book BUT WHY? which is available to order now and also on audiobook.**
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FANCY SOME MORE?
READ Rosie’s eyeopening list The Reality of Type One Diabetes where she explains what having this lifelong condition involves.
LISTEN to Giovanna Fletcher on But Why? podcast talking all things Life, including work and parenting, and the line between holding things together and consciously letting them go.
LISTEN to Hetal and Roger talk about their experience of Visual Impairment, and Kirstie from the Guide Dogs charity, in this episode of But Why? podcast, where they explore the misunderstandings around blindness.
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