Sunday 12 March 2023

The Worst Week Of Our Life - Type 1 Diabetes

So a few weeks ago we had one of the worst weeks of our lives. 

I didn't say anything at the time as I think we were all coming to terms with it (and we still are and probably always will be). So I just kept posting as normal. 

But I know many people on here have followed this blog for a long time. Some pretty much from the beginning, 11 years ago, you've watched our little family grow up and see our children be born and blossom into amazing young people. 

Our eldest had been very tired and down the last few weeks of term. We kept asking if she was okay, and put it down to hormones and being tired at the end of term, I was worried she was a bit depressed. We then went for a day out (to Harry Potter world) and she really wasn't herself. the next day she slept in (very unusual) and then was tired in the day as well. 

We took her to the doctors and, after a bit of a stressful run around, went straight to hospital where they had phoned ahead. When we got there we went straight into resus where about 8 or 9 doctors and nurses were waiting for us. 

She was unfortunately diagnosed with type 1 diabetes. This came as a massive shock for us. And as they tried to stabilise her, bringing her blood sugar slowly back down and get her rehydrated. She was very dehydrated and although she had been drinking loads the fact she had no insulin in her body meant it just got flushed straight through her. 

The next 24 hours were really stressful. She had great care all the time from the hospital as they tried to get her levels back to normal, giving her fluids via a drip and slowly injecting insulin into her body. Keeping her in the high dependency unit for the first day. 

Obviously we wanted to know what had caused this, but type one diabetes has no known cause, it just happens, her body has stopped producing insulin, which means she can no longer process carbohydrates. It's not caused by diet or lifestyle. 

We also beat ourselves up a lot for not getting her there sooner. But the changes in her were so slow and she kept doing her normal routine (even baking cakes after school). 

The next few days she really quickly improved in her condition. The learning curve was pretty steep when it came to learning about diabetes. It seemed like we were flooded with knowledge, and all of it so important.

Basically to keep her alive she needs to have two types of insulin every day. One is a slow acting, to be taken once a day that works at a low level, all the time. The other is a fast acting insulin that needs to be taken every time she eats any carbohydrates. 

So for every meal we have to work out the carbohydrate in what she'll eat, then make sure she has the right level of insulin (correcting for what her currently blood levels are at that moment as well). 

First time out for a trip to Hereford

In the future she can be fitted with a pump, but she needs to be able to inject herself first, so we're using this as an incentive. The pump still needs lots of working out, and changing every three days, but it will save having quite so many injections. 

For our stay at hospital we tried to make it as "normal" as possible. I brought her brother and sister in each day (her mum stayed there with her), we were allowed out into Hereford for trips out, in fact we were encouraged to, to get used to reading her levels and figuring out what to do in different situations. 

After the cinema trip. Almost felt normal. 

We even had a great trip to the cinema. 

She was so pleased to go home! We all were! That first night with the five of us back under one roof was so good. And yet it was like having a new born back in the house, we had to keep checking her levels and adjust to suit. It's been a bit like being a safe cracker trying to get them right at night (annoyingly her body still, intermittently, produces a bit of insulin randomly, for the next few weeks, which can make her levels crash or peak for what seems like no reason - annoyingly called "The honeymoon period"). 

She has a sensor on her arm, which makes it so much easier than finger pricking, She can scan herself and we will know her blood sugar level then. They have better tech which links to up to 5 phones all the time, but the funding has just been pulled for that. So we'll sit and wait hopefully for that to come back. 

We're slowly getting used to our new normal. Luckily I work from home, only a mile from school, so I'm going in each day (she's only been back for one so far) to give her the injection for lunch. And I can work out tea and try to make it as easy as possible for her. 

She has coped brilliantly with it and seems to be coping much better than me or her mum. The first week I was an emotional mess. 

She came home and that first morning back baked a cake to work out what carbs were in the whole thing, then worked it out per slice! I was very proud of her. Her brother and sister have been great as well, helping to work out what she's eating, and just generally being great siblings. 

Things not to say to me or my child-
"Well it could be worse" - Yes it could. I know that, it could be a hell of a lot better as well. Please don't say this to someone who has just had their child become disabled in a matter of days. She'll be dealing with this for the rest of her life. 

"The technology makes it easier" - It does, it really does, but believe me it's still crap. Yes, it's no longer a death sentence, but it's still rubbish on so many levels. Imagine trying to work out the carbs for everything you eat and making sure you have the right level of insulin for it. Now imagine doing that for the rest of your life.

"She shouldn't have eaten so many sweets" - It has nothing to do with how we lived or our diet, it's just something that happens unfortunately.

"So you can scan yourself, it's like a superpower" - It is not a superpower and please don't patronise her, she's 11, not an idiot. I know you can try to look for positives on all things, but there aren't really any here. We have talked honestly with her about it. 

"She might grow out of it" - as the one lady doing the food at hospital said to her, trying to be kind no doubt, but she was confusing it with type 2 diabetes. She won't grow out of this. 

It's hit me really hard. I'm a self sufficiency expert, someone that has trained their whole life to need as few people and inputs as possible. Self reliance, to be able to provide everything my family needs. I can do most things, I even took up swimming as I was worried if they fell in I wouldn't be able to save them. Now we're dependant on insulin and constant technology to keep my first born alive. 

I'd trade this with her in a second if I could. I wish I could take it from her and have to deal with it instead of her. It feels like such a complication on life for her and it makes my heart ache. 

*I spoke to her about posting this before I did. I wanted her to say if it was okay or not to use these pictures. She knows that this blog is a big part of my life and was fine with me sharing this with people I consider friends and the fact it might help educate between type 1 and type 2 diabetes. 


  1. This comment has been removed by the author.

  2. Really sorry to hear this for your eldest but you will find a very willing pupil in me. I'm disabled and can't do many of the lovely things you do with your children, but some people around me have diabetes (at least two type 1) and someone as articulate as you can help the rest of us to learn.

  3. What a shock for you all. I can see that this is a blow to your aim to be self-sufficient, but illness can happen at any time. You can be proud of the fact that your children have grown up learning to be practical and independent, and understanding a lot more about food and food production than most young people. That will stand your daughter in good stead as she navigates through the different path that she's now got to follow. You're clearly taking this new challenge on board as a family, and I wish you well with it. It's going to take you time to adjust, don't be too hard on yourself.

  4. Well done all of you. What a shock. As a family, you are so strong, even though I am sure it knocked you all for six. I knew about the dehydration as that was what made my friends 3 year old son be noticed. Take care all of you.

  5. So sorry to hear this Kev, devastating for you all, but knowing what sort of people you all are I know you’ll cope with it. Wishing your daughter and the whole family the best of luck and thank you for telling us all about this, we are all on the journey with you

  6. What a shock for you all, I had no idea Type one could appear so suddenly it's something I know nothing about.
    Your family are amazing - Your daughter is a star - and looking so confident. Thank you for telling us - we all need to learn

  7. You are such a strong family together, my SIL has type 1, same happened to him, a rush to hospital, he wears the sensor. We all want the best for our children and in my case grand children, sending love to you all.

  8. Kev, what a scary experience for you and your family. It's something nobody expects and I am so relieved to see her resilient smile. Those family photos are absolutely priceless!

  9. It seems especially cruel as she loves to bake. Perhaps she will start writing a cook(bake)book for those with diabetes. So grateful that she has a wonderful, supportive family unit. Blessings...

  10. Devastating news. However it is a credit to you all as a family and the way you have helped your kids find and develop their strengths and connections, that your daughter has the strength and resilience to build this into her life. Speaking of connections, isn't it so often the case that self-sufficient people contribute heavily to the community around them and you deserve all the support that wider community of resources can provide, so don't beat yourself up about that.

  11. Good luck to your lovely daughter and how brave of her to let you post about it. There will be a lot of adjusting but it's obvious she's getting a handle on it. A friends daughter developed type1 and her attitude was OK let's deal with this, she was 13 at the time. She's now a chef at her families country pub. Just carry on what you're doing and supporting her you've got such a wonderful family unit you'll get through this. Best wishes to you all, Diane x

  12. don't know if helpful
    have been listening to Jonathan L andsman
    fatty liver video with at least a dozen doctors interviewed
    they speak a lot about diabetes
    hope you can hear him with your daughter and take notes
    will pray for her
    thank God it was caught in time

  13. I have followed your family for years. Sorry about this. Life is a bitter struggle. Remember times of happiness! Odd advice I know but I actually have found it comforting.

  14. Oh Kev, what a shock for you and your family. You and your wife have good heads on your shoulders and you will help your daughter come to terms and deal with this. I believe there are some good books out there aimed at tweens and older dealing with D1. They may help your family with some coping mechanisms. Take care.

  15. What a shock for you all. At least your daughter has wonderful parents and siblings who will help her cope with this.

  16. Kids being ill is a terrible horrible situation. It hurts more than if it is an adult. I remembered how shocking it was when you fainted, fell and broke your jaw. Now this is another shock. It is good that you have a strong, supportive family unit to deal with this. Hope her body continues to stabilize and handle the necessary medication. Good luck, Kevin

  17. Have a look at father_of_daughters on instagram. He and his daughter have documnted their Diabetes journey over the past year

  18. Kev - Thanks for sharing this, as hard as it may be (and thanks to your daughter for being willing to share it with us). The illnesses we never see coming are the ones that are the hardest - if, for no other reason, they are the ones we would like to believe we should have caught earlier on. As a father of a daughter with anorexia that was diagnosed in her teenage years, I am quite familiar with the "I should have seen the signs earlier".

    Diabetes has a rather long and unfortunate history in my family, so I am unfortunately more familiar than I care to be with it. It is a manageable thing - as odd as it seems, your daughter with Type 1 may be in a better place to control it than those who much later in life develop Type 2 and have years and years of habits they have to change. And the technology is much better than twenty years ago - I have friends and families with the pump and it just because another thing they learn to manage as they live their lives.

    Prayers up for you and yours, friend.

  19. I can't add much to what others have said, but sending you and your family virtual hugs, and adding you to my prayer list.

  20. I'm here via Toirdhealbheach Beucail's blog. You are a great father and I can tell because the great ones would trade places with their kids in situations like this. On a side note, my wife is a physician and is currently testing one of those sensor things that connects to your smart phone and gives blood sugar updates. She is doing this so she can prescribe them to patients and know exactly what needs to be done. I had never heard of them until she came home with one on her arm. Hopefully it can catch up affordably and ease the stresses of this disease in the future.

  21. What a blow to your lovely daughter, Kev. I've watched Evalyn grow up from the bitty baby pictured in "savingmyroots" blog, and thrive throughout your current blog. Blessedly, she is strong and conscientious and blessed with such a wonderfully supportive family. My heart goes out to all of you as you deal with awful situation. Sending love and hugs from Ohio.

    1. Ooops. I meant "keepingmyroots", your original blog.

  22. This is a terrible blow for you all. It will complicate your daughter's life but she will prevail. My grandson was diagnosed with type one at two years of age. Years of sleepless nights were required to monitor his sugar levels. He will be 21 next month and is living on his own in a big city, far away and attending University. He has a pump and learned to manage his insulin, on his own, several years ago. I think that it developed a discipline in him that has served him well, as he is an outstanding scholar. I am glad that your girl is alive. You have a beautiful family. In Canada there is very good government support for diabetics. I hope that you will have the same kind of support there as you have enough dealing with the emotional aspects of this worrying disease. My love to all of you. Hang tough.

  23. Thank you so much to every one that has taken the time to read the post and comment. It means so much to us. We've had so many (from other social media as well and emails as well) and feel very loved at the moment. Sorry if we haven't replied individually to them, there's been a lot!


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