Hi Jem83. Welcome to the place no-one wants to be
🙂
Thanks
@Lucy Honeychurch for tagging me. I would have answered last night, but I was on swimming club duty with the not-so-little ones, so I didn’t have time to visit the forum yesterday.
That’s more or less where I want to start. My two type 1 children both have swimming coaching. They were already members of the club when they were diagnosed. Yes, we had to make adjustments (and there were one or two scary moments when they were in the pool and I suspected they were hypo) but we found a way and carried on. You will do the same. You might not think it now, but you will, Scouts honour. My daughter even swam competitively for the club after she was diagnosed. She’s studying hard for her GCSE’s next year and is expected to smash them! I’m not saying any of this to show off (honest guv’) but to show you that his future can still be bright. You and he are still in charge of it.
Children are more resilient and adaptable than we often give them credit for. He might be asking lots of questions now, but that's because he’s dealing with some big changes, he will adapt and cope. No doubt you are being honest with him, and that is exactly the right approach. Even though it was nearly nine years ago, I still remember clearly the night I took my son to A&E for what I knew was going to be a type 1 diagnosis. He asked me if he had it too like his sister did. I wanted to lie, tell him he didn’t have it, that he would get better, but I knew I had to look him in the eyes and tell him the truth. He took it better than I did.
Everything you are feeling now is absolutely normal, all the emotions; the resentment, the fear, the anger and the frustration. If you could, you’d swap places with him. Am I right? My wife and I felt exactly the same. Those feelings will give way to a sense of duty to help your son with his new life. You phrased it very accurately when you described your lives as a new kind of normal! That is exactly what it is. Everything you are doing now that seems strange and difficult will become routine and relatively straightforward to the point where you won’t really notice you are doing anything different.
The honeymoon period will make things more difficult, I can’t lie, but looking at it positively, when it does end, his blood sugars and responses to food will become more predictable and easier to manage. Our son was diagnosed more quickly than our daughter simply because we saw it coming a mile off. This led to him having a honeymoon period, which his sister didn’t have as she was so far down the line when she was diagnosed. He was particularly unpredictable at night, when his pancreas was at its most active. His hospital team took the decision to put him on a pump instead of injections. If your son has the same experience, don’t be shy in asking your team about going on a pump. They might not think a pump would be suitable for him at this stage for reasons they will no doubt explain, but there’s no harm in asking if you think a pump might help.
The Ragnar Hanas book is excellent, it is considered to be the bible for parents as far as type 1 is concerned.
If your son wants a snack, don’t be afraid to let him have one. Children with type 1 often need one to maintain the right level of glucose in their system anyway, especially in the evening to sustain them through the night. Our children used to have a snack mid-morning, mid-afternoon and supper in the evening. This is particularly applicable to those on injections. Your dietician will help you with good choices of snack. Ours used to have a 10 carb biscuit in the morning, an 18 carb cereal bar in the afternoon and supper would be a mixture of things, biscuits, fruit, yogurt etc. Well, I say “used to”, old habits die hard (especially for a growing lad) and although they don’t strictly need those snacks now, they still have them. My daughter will occasionally not eat one, but my son is like me, he likes his food too much, so is still a regular snacker. He’s on a seafood diet, if he sees food, he eats it!
😉 Your son doesn’t have to be deprived of any food, it just has to me managed. I completely understand why you want the whole family to change their eating habits, and it’s totally up to you what you do. The approach my wife and I took was to carry on as normal as far as we and their non-type 1 younger sister were concerned. We felt it was important for them to be aware that while they are just the same as their peers in so many ways, they are also different and have to approach certain parts of everyday life accordingly. We knew that as they grew older and started spending time with friends that their friends would still stuff their faces with fast food etc., so we wanted them both to get used to this early on.
This won’t be any consolation and is really aimed at helping you realise that you’re not alone or unusual in how you feel, but night time hypos are one of the scariest aspects of caring for a child with type 1. As part of another hat I wear, a survey was conducted among parents aimed at finding out what their hopes and fears were, and what concerned them most. Guess what, hypos, and especially night time hypos, came out on top! On the Facebook groups, there is always someone around at three in the morning to ask and answer a question. It’s a sort of in joke among parents of type 1 children.
You are spot on! It is a complicated condition, far more complicated than a lot of people realise. Every day, you will become more experienced and knowledgeable. Every day, you will learn something new. Daunting, yes, but look at it this way, every day you will be better at caring for your son than you were the day before.
A diagnosis sometimes changes parents as people. It made me a more positive person. I used to be quite a pessimist (because a pessimist is never disappointed, right?) but I knew I couldn’t be like that in respect of diabetes. I realised that my behaviour and attitude towards it would shape how my children felt about it. I wanted them to see diabetes as something they had to live and deal with, but not something that would define them as people.
Sure, it’s tough now, it’s the start of a long road, but one that gets easier to navigate. You’ve got support from your hospital team and here, so there’s always someone to help. No question is too silly. Your posts tell me you’re already doing a great job. Get yourself a bottle of wine for the weekend! You deserve it.
🙂
I'm surprised he hasn't been started immediately on insulin, there doesn't seem to be any reason for the delay. However, I can assure you that, as soon as he starts receiving it he will feel considerably better, so it will be a positive step. How did his diagnosis come about? 
