What would happen if I was no longer around?

Before I start this post I want to make something very clear. I am not planning on not being around, as far as I know I am 100% healthy, I run several times a week and my diet is ok (ish). I'm not planning on 'checking out' anytime soon. That said with the best will in the world very few people know when their time is up and this got me thinking.....
I will often joke with people that if I was no longer around that my husband would not know what do with regard to his own diagnosis as he doesn't know how to even order his repeat prescription!!! I do it for him. As a mum I never want to think about not being around or any of my four children but what would happen to them if something happened to me? Especially the two with type 1 diabetes. I do all of the ordering of supplies from the pharmacy and the pump supplies from Medtronic. I do most of the set changes on both children (although Victoria can do her own, Samuel is too lazy), I sort out the hospital appointments with The Prof, and in fact go to all of the appointments with the children. I know how to set the pumps up, carb count the meals and work out the insulin doses if needed. Part of this is a control thing for me, I want, no need to feel needed. In reality though, surely I am setting them up to fail. If something were to happen to me tomorrow, what would they do? I know that my dad worries about this all of the time and has spoken to me about it in the past. Obviously he doesn't want anything to happen to me, but he worries constantly about the children ad their health.
How many of you parents have things in place? I keep all of  their hospital letters in individual folders, but I really should put all of their information, phone numbers, prescriptions etc together in a folder so that they know what to do.
Its a sobering thought really.

10 years on - Samuel's point of view.

March 15th 20019 marked Samuel's 10th year of living with type 1 diabetes. I asked him a few months back to write something for me to post about what having type 1 diabetes meant to him. He didn't want to do it then so I didn't push it.  I thought I would ask again  and  this is what he wrote:

" 10 Years with diabetes: My name is Samuel Warrington. I was diagnosed with diabetes at the age of 4 on March 15th 2009. It changed my life completely. I had to be driven to hospital in the back of an ambulance. However, the support that I had from my mum and dad made me feel a little bit better about having it, but it did mean that I wasn't allowed sleepovers or a lot of sweets or sugary stuff. When we moved to UCLH it made life easier for my mum, me and my family. Prof Hindmarsh is a really amazing consultant who knows everything about type 1 diabetes and who set up and manages my insulin pump. I also got to meet a cool diabetic person who is now my diabetic pump buddy. Her name is Kita and on August 7th 2012 we got our first pumps together. It was really nice that I didn't have to go through it alone. 4 years later we got a pump upgrade that we were super excited about. Then on January 13th 2018 my sister Victoria was diagnosed. The family was a bit confused as it had come out of nowhere. She is very lucky that she has me as a brother as I can fully understand how she feels when her sugar is high or low. I am now currently 14 years old and I am happy that I have such caring people around me. "

I am really proud of how well Samuels deals with his condition. He plays football, is excelling in school and doesn't let him stop him doing anything he wants to.

One year on.....Victoria’s words.

I was thinking about this the other day, I started this blog to share my opinions thoughts of living with a child with type 1 diabetes which as you know turned into two in January. I thought that you may find it interesting to know what the children themselves thought.
Victoria came forward first, I’m still waiting for Samuels....

“Hi, my name is Victoria but I now go by Tori. On January 13th 2018 I was diagnosed with type 1 diabetes. Before that date I had searched the signs up on the internet and figured it out, I didn’t tell anyone because I didn’t want it to be true. When we tested my sugar it was 33.3, not that great. I have to admit I did have a bit of a breakdown. We went to Southend Hospital but whilst we were driving there I had to tell my best friend Emily. We got to the hospital and I had to have blood taken from my veins. They tried 3 times in my right hand, and twice in my right, they also tried in my inner elbow but it took ages for them to get any blood. People say that hospital food is not nice but it was for me. A couple of days later I was transferred to UCLH which stands for University College London Hospital where The Prof is my Dr and I got a pump. It has really been a year. I have had setbacks but I got over them with everybody helping me. It’s been a real journey.
My name is Victoria Warrington, go by Tori and I’m Type 1 Diabetic.”

For those of you who know Victoria she is saying that she goes by Tori as I (mum) prefer that to Vicky.

So there you have it....that’s what she has to say on the matter.

CWD mum struggling: The bigest test, tears and tantrums.

If ever I needed proof that the age of diagnosis mattered then this last week was it; it was glaringly obvious in all its ugliness. For those of you who may have just stumbled upon my blog I have two children who have type 1 diabetes. Samuel aged 14, diagnosed when he was 4 years olds, and Victoria aged 12, diagnosed 10 months ago when she was 11.

Every October half term myself and the 4 children go with my friend and her 2 children to Great Yarmouth for a week. This is something we have done since 2009, it's a week filled with fun, laughter, swimming, rides and ice cream. The children charge around from the moment that they open their eyes until they close them again when they go to bed, this is especially true for Victoria and her best buddy Emily.
At the time of writing this we have been home 9 hours, this last week has been, for me, the most stressful, frustrating and heart breaking since we started on this journey almost 10 years ago. I've always told  both children that having diabetes wouldn't stop them doing anything that they wanted to do, that I would never stop them doing anything because of  their diabetes. What a liar I turned out to be!
For Samuel the week was ok, he is quite laid back, goes with the flow. He isn't a fan of swimming, he went to the park a few times but he goes at a slower pace. The other thing that goes in his favour is that he doesn't remember life before diabetes, for him, it has always been there and he generally goes with it, not all the time, we do have the occasional outburst but I expect that to happen.
Victoria on the other hand.....wow!!!!! Even before diagnosis she would fly of the handle, she would be stroppy, defiant and generally hard work. This week she took it to a whole new level of crazy!! I get it, (as well as anybody can who doesn't physically have it) she was annoyed that she had to get out of the pool because she was hypo, yes I had given her something to eat before she got in, and yes we were continually getting her out to test, but swimming really effects her. She was getting frustrated because she couldn't go straight from swimming to the park. I was ruining her life, I was mean, I didn't want her to have a good time, you name it, she said it, and this was all on the first day! This pretty much continued for the whole week, we had lots of tears, her, me and Karen. There was some shouting (not useful) and there was some door slamming, her, not me. It was a hard week, and the first real test since she was diagnosed, it was really the first time that type 1 slowed her down, got in her way, interrupted what she was doing.
For me, it was the first time I really felt helpless, I didn't have the words to make her feel better, because, for the first time it really did stop her (albeit not for long) in her tracks. It was also the first time that I really had had enough, I didn't know what to do. We did, however, muddle through the week and come out the other side.
Thankfully, next week we have clinic and I am hoping that she will have a conversation with The Prof and tell him how she really feels. I'm hoping that he will have some answers, and this mumma for probably the first time doesn't know what to say.

So excited ......

Before I start on this post I must apologise, there are other things that I was going to blog about, other things I need to share about the children. However, something happened today that I am so excited about that I must share.

I have a place in the London Marathon next year running for JDRF!!!!!

Some if not all of you are probably looking at this and thinking.......is that it?! Really!!!!

Let me explain.....
When Samuel was diagnosed in 2009 I entered the London Marathon for JDRF, which I promptly forgot about until the email landed in my inbox welcoming me onto the team. I couldn't even run for a bus at this point. This is where my running journey began. Since then I have completed

• 11 Marathons
• 11 Half marathons
• 1 Ultra marathon
• 1 Nulcear race
• 4  10 mile races
• 17  10k races
• 7   5 mile races
• 54 parkruns

There could be more, but I think thats it at time of writing.

So, what makes this news so exciting? 2019 marks Samuels 10th year of living with Type 1 diabetes, and what with Victorias sudden diagnosis in January I wanted to set myself a bigger challenge. I have run Brighton Marathon for the last 7 years and I am set to run it in 2019, I have applied through the ballot for a London place every year for the last 9 years with zero luck. As I walked most of London Marathon when I completed it the first time I've wanted to have another go at it now that I ca actually run. So, what I decided to do was apply for a charity place with JDRF, which is not a decision I took lightly as I have to raise £2000.
Today I got the phone call offering me a place! I've waited 8 years for this...hence my excitement. So there you have it.
Now, I don't like to ask, but if you have any spare pennies and feel the earge I have posted the link to my fundraising page.


https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=CureforSamuelandVictoria&pageUrl=4

School Attendance Meeting.....

Before I start my rant about this particular meeting I had at Samuel and Victoria’s school I want to make it clear that I am not one of those parents who get upset about their child not getting the 100% attendance award at the end of the school year. Nor do I feel aggrieved about the fact that they will never get it, to me it’s just not a battle that I personally choose to fight.

Let me tell you some things about Samuel and school. He is currently in year 8 and just picked his options, he has chosen French, History, Business and Philosophy & Ethics. Academically he is doing extremely well, in most of his core subjects he is above where he should be. He is never late for school, it’s a thing he gets quite anxious about. He has never had his expectation card signed and has never had a detention. A model student some may say.

A couple of months ago I received a letter regarding Samuels attendance, it was currently sitting at 91.3% and the school cut off is 92%. I know!! We are talking 0.7%!! The letter explained how important regular attendance is, and how poor attendance has shown to have a detrimental effect on GCSE results. Again let me remind you we are talking about 0.7%. The letter kindly invited me to attend an attendance meeting to discuss Samuels poor attendance.

So I went, armed with all my appointment letters and letters fromThe Prof.

Here are some highlights......

Me: I was a bit put out at the wording of the letter if I’m honest.
Him: Yes, we word it like that to get a reaction so you will come to the meeting.
Me: Oh. Ok, you know that he has type 1 diabetes don’t you? And he is treated up in London at UCLH as he has an insulin pump?
Him: Yes we know, but not everyone who has diabetes has this much time off. Why did you decide to get a pump?

At this point I was about to get cross as I was thinking 'how dare he question me on where and how I treat my child! However, in true Disney style I 'let it go'.

Him: Is Samuels diabetes well controlled?
Me: Well yes....unless.... He has a cold, is anxious about anything, has had a growth spurt, put on any weight, if he has walked to school, or had PE, or the weather is too hot, or too cold, or if he is tired, or hormonal. Apart from that though, yes he is well controlled.
The letter said about the attendance affecting Samuel academically, have you looked at his report / grades?
Him: Yes I have, imagine how good he could be if he was in school more.
Me; Mmmmm (inside voice said imagine how good he could be if he didn't have a life threatening illness) As you can see he is never late, has never had his card signed.
Him: Yes, a model student....so if we could just get his attendance up.
Me: You do realise that I bring him in much more that I really should do. If he has ketones he really should be at home, (out come the UCLH sick day rules) I can't do all of t his at home as he needs to me monitored as the ketones can make him sick. If he misses school he will always go round to his teachers the next day to pick up any work he has missed.
Him: You could bring him in once he starts to feel better. We would rather him late than not at all. He wouldn't have to go to lessons.

I'm now wondering if he doesn't have to go to lessons then what is the point of me bringing him in when he is feeling so rotten.
We then looked back over the previous year when he did have quite a bit of time off before the summer. For a minute I couldn't think why so I looked it up on my phone. Samuel has a couple of weeks where is was waking up extremely high and with ketones, it was like I had filled the pump with water not insulin! It turned out, once we went to clinic that the boy had grown 3cm and had put on half stone, which in return had knocked out all of his pump settings. All of this was written in a letter from The Prof which I just happened to have in my bag!
We went backward and forward a bit more which resulted in me having to sign a form to say what we had discussed. I did then ask him if I would be getting a phone call to discuss Victoria as she had had a fair amount of time off. He said possibly, so I suggested that we do it as I was there, as it would be pretty much the same as what I had said for Samuel. He declined as he didn't have any paperwork. I left the meeting in pretty much the same mood as when I went in! What a waste of my time. Don't get me wrong I understand that attendance is important, but I would lay money on the fact that there are children in that school with a far worse attendance than Samuel whose parents were not sitting in the same sort of meeting that I was!

Diabetes awareness week ‘18: The signs..

First off let me start by saying that the problem with diagnosing type 1 diabetes is that it’s symptoms are very general and can be easily explained away. When I think back to when my husband was diagnosed in 1996 we explained away every single symptom except the blurred vision. He was tired because he had been working so hard. He was up during the night going to the toilet because he used to drink quite a bit. That’s the danger with Type 1, you can explain it away, the symptoms are similar to lots of other conditions such as flu. However, if it’s left undiagnosed, so untreated the result can be fatal.
So, here they are, the four Ts

• TIRED
• THINNER
• TOILET 
• THIRSTY

If you only take away one thing away from reading my blog, make it this. If you notice any of these symptoms get it checked out. Don’t be put off, ask for a blood glucose test, don’t take no for an answer, it really could be the difference between life and death.