Life with two adult children with diabetes!!

 How is it possible that I have arrived at this point in my journey of parenting two children with type 1 diabetes. It seems crazy to me how many years have past since I started this blog, and how we are now choosing a new hospital as my son moves over to adult care!

I haven’t posted anything for almost two years now I think, I always mean too but then never know what to write as I have less and less control over their lives and if you recall I struggle with that as I am a self-confessed control freak. It is so hard to sit back and allow both of them to make decisions that I might not agree with but can’t stop them. 

Let’s start with the oldest child, almost 20,  he absolutely does not like wearing a sensor and it is a fight to get him to put one on. In fact at his last hospital appointment his HbA1c was the highest it has been for a very long time. He then looked at me in disbelief and I kid you not these words came out of his mouth “whys that so high then?” My response “well what do you think?” He knows full well why. To be fair to him though his whole mindset changed when out of the blue his consultant was changed, all of us had such a good relationship with the Prof, and still we have no idea what happened. On a more positive note he  now has a full-time job as an accounts assistant, passed his driving test and has his own car. I couldn’t be more proud.

Now…. The almost 18 girl child! She has always caused me an immense amount of stress, I joke that on my death certificate under the section cause of death it will say her name! She decided last year that the pump was no longer what she wanted and she wanted to go back to injections. She felt that she never really gave it a go and she had no choice. To be fair to her that was somewhat true. She was 11 when she was diagnosed and I didn’t really give her an option. I moved her care to UCLH under the Prof and got her a pump. You also need to remember that during the COVID pandemic and lockdown she developed an eating disorder and is still very body conscious. She isn’t keen on how the pump looks. We spoke about it a lot, and came to a compromise that she could have a pump break for a few months. However, I said to her that if she decided that she wanted to go back on the pump that I wouldn’t say I told you so, as long as she didn’t not go back due to her stubbornness. It took about a year for her to admit that the injections weren’t working, her sugar levels were out of control and she admitted that she had been feeling awful, so she is now back on the pump. She is also working full time as a carer and as her driving test some point next week, she won’t give me the exact date. It goes without saying that I am equally proud of her.

It’s hard to sit back and watch any of my children make decisions that I may not agree with, but I do know I have to let them go, and just hope that I have done enough to ensure that they make good decisions. 

Life with older children

 As I write this I am sitting in the garden whilst the almost 18 year old child with diabetes is at a party and the almost 16 year old child with diabetes is not long back from the gym. I’ve logged onto my blog and realised that I’ve not posted for almost a year! That seems crazy to me as it’s not like nothing has happened this past year, in fact it’s probably been one of the most turbulent ones. 

It started back last year when we had a hospital admission with Victoria, she presented with high ketones and I had ran out of ketone strips so had no way of monitoring them. It left us no choice but to go to A&E locally, which in all fairness to them and point of entry they were extremely efficient and red flagged us straight through as they suspected DKA…it wasn’t, however, the experience was extremely frustrating. Around the same time the eldest child moved out, not she is 20 so it was always just around the corner, but the way it happened was quite traumatic for me. Thankfully it has all worked out and she now lives less than a mile away, so literally just around the corner.

Victoria had another hospital admission, this time with a stomach bug which resulted in high ketones and a two night stay in hospital, made all the more exciting by me picking up the same bug! Foolishly I allowed her to drink from my water bottle……schoolgirl error.

That’s a quick catch-up so now the reason for the post. By nature I am a bit of a control freak, I can’t help it, and what I am finding now that the children are that much older is that I have much less involvement in their diabetes care. They both have the Minimed 780 pump which is an amazing bit of technology, it does much of the work itself, and I am only really needed to insert the sensors, neither of them like doing that. Other than that I am not needed, so have become increasingly redundant. This is causing me much anxiety and stress, it’s hard for me to set back and allow them to make their own choices, especially as sometimes they are not the most sensible. Victoria has a much more reckless personality, and Samuel having had this condition for 13 years doesn’t want to be advised, especially by me as I don’t know how it feels to have diabetes. I get told by the pair of them that I don’t understand and never will, which is true. However, they don’t understand what it is like to be their mum and watching them do things that are not necessarily the most sensible. It’s such a tricky path to walk…..any advice I’d welcome! I suppose the only thing that I can really do is have the confidence that I have given the skills to make sensible decisions and always be their, in the background in case they need me.

Parenting big kids is much more challenging than little kids x

Parenting older children….

 I’m going to start this post with the realisation that it has been almost 9 months since I last wrote anything. I think that’s the longest gap between posts since I started this blog. Things have seemed to have gotten in the way, which isn’t surprising really after the last 18months. 

Lots has happened since the last post; Samuel had a pump upgrade to the Medtronic 780….complete game changer in our opinion. I will write another blog post about that. We all had COVID two weeks before Christmas! Yes…all of us! At the same time! That was fun…again I will save that for another day. Oh and Victoria was discharged from the Eating Disorder clinic and not for a good reason.

None of the above though is the subject of this post, this one is about how everything that has happened, and continues to happen impacts me, slightly self-indulgent I know, however it’s easy to forget about how having a chronic health condition impacts the wider family.

If you’ve read previous posts then you you will know that I live in a very busy household, my husband and I have four children 19, 16, 14 and 12 so all live at home as well as his mum. My husband has type 1 diabetes along with the 16 and 14 year old, you can imagine the fun we have when they all have high blood sugars, are completely irrational, argumentative, angry and each think that they are right! Over the years we have muddled through, all being slightly agitated by the others at times like in all big families but we’ve been ok, I’ve been ok…..until now.  

I am open to the suggestion that all of what I am about to say could be partly down to hormones ( I am a woman of a certain age after all ) but I’m not 100% sure. Over the last few months I have noticed that I have been increasingly more anxious, remember how you used to feel before a test at school? Out of nowhere I’ve been feeling sick and worried, taking more time to fall asleep as mind won’t settle. 

I wonder though if it’s because the children are getting older and I am losing some of the control over their health and diabetes. When Samuel was first diagnosed he was only 4, I had complete control. As the years have past I have had to release my grip bit by bit, and now at almost 17 I don’t have much to do with his day to day control. Thankfully he is still fairly sensible and his control is not too bad currently. The same can not be said for Victoria. We had clinic last week and her HbA1c is the worst it has ever been, even worse than at diagnosis!! Her behaviour and regards for her health is reckless, and she doesn’t seem to care. She battles me most days, and as her mum it is heartbreaking not to be able to do anything to help her as she won’t allow anyone to help.

All of this has resulted in the slight decline in my own mental health which I know is something I need to work on, even if it is making time for a run.

Parenting big kids is hard!! 

When type 1 diabetes and an eating disorder collide.

 If you are regular reader of my blog you will know that I will always try and make it light hearted, well as much as living with 3 people with type 1 diabetes can be!! This is not going to be one of those posts. That said this past year, like for everyone else in the world has  it been great. Thankfully we got through the first wave of COVID unscathed and I hope the same can be said as we enter the second wave. 

The original lockdown in March allowed us as a family to eat around our dinning room table together , something we had only managed to do at weekends. We spent more time together, we managed to not kill each other!!! Which, let me tell you when there are seven people all living together and spending that much time together is no easy feat!! I started to work on improving my fitness again as I had been given this great gift of time and my T1 daughter started to workout more. I encouraged this as we did it together and she seemed to be enjoying it. 

However, after a while there was a noticeable shift in what she was doing. Her workouts became more frequent, three times a day after every meal and increased in length. She decided that she was not going to eat after 7pm, which was not a concern to me as many people intermittent fast. What it did do however was shift dinner to 5pm, and she became quite insistent that we ate at that time. 

As lockdown continued throughout the summer her body was changing and she was becoming stronger. Her determination was fierce as she had a plan and knew what she wanted to do. From a mother’s point of view there was little concern over what she was doing as I could see that she was eating alongside her exercise. As September approach I begun to talk to her about going back to school and what that would mean for her routine. She wasn’t quite sure what she was going to do but didn’t seem that worried about it.

September arrived, I went back to work, and the children went back to school. At this point I’m not going to go into great detail as I’m not going to betray my daughters trust. She doesn’t necessarily volunteer information to me, but if I ask her an outright question she will tell me. 

She hasn’t been eating breakfast and lunch she only eats dinner. If dinner looks like it may go past 7pm she refuses it. She weighs herself when she gets up, home from school and again before bed. She will work out how many calories she has eaten in the day and then workout to get rid of them. From a diabetes point of view she has been turning her pump down as she doesn’t want to go as that would mean she needs juice or glucose tablets and she doesn’t want the additional calories. The problem with that is that by running her sugar levels high she risks complications.  The saving grace here is that due to her having diabetes we have access to the dietician, who my daughter has a fantastic relationship with and we have access to the psychologist. I am pleased to say we have had conversations with both and have started the ball rolling in getting her some help with an eating disorder team. With a condition which in order to control means you have no choice but to look at the back of the food packages of every single thing you eat is no wonder so many young people with diabetes also develop eating disorders. That’s without the continued bombardment of diet adverts and filtered pictures on social media. I also have to take some responsibility for this, I constantly complain that I’m too fat, I weigh too much and that I have nothing to wear. This is especially true as like many I have gained some COVID weight. However when we are being so critical of ourselves we need to remember who may be listening.

The road we are currently on is going to be long, and it’s going to be hard for everyone but we must take it so that I can hopefully get my happy daughter back.

Corona Virus - what it means for us...

Before I start I want to make it clear that this is what has been going on in MY house, I am not telling anyone what to do apart from the obvious STAY INSIDE.

I will admit like many when the news of this virus started I didn't think it was anymore serious than a bad case of the flu. I was fully aware that in my house of seven there are four who are more vulnerable. My mother in law is 76 and has COPD and ITP; my husband has type 1 diabetes and due to a case of pleurisy a few years ago shadows on his lungs; Samuel has type 1 diabetes as does Victoria. However, we still went about our business, that was until Sunday (15/03/20), there must be something about that date as it was 11 years ago on that date that Samuel was diagnosed. After dinner Samuel declared that he wasn't feel very well, he felt sick, that usually means that he has ketones (which can be extremely dangerous, can lead to DKA, which can be fatal)  so he checked and yes he did. So we did what we always do in this situation and they eventually came down. The following morning he still felt off and had developed what I can only describe as a barking cough, along with a side order of ketones. I went off to work and left him in bed, the husband had been up during the night being sick so he was also in bed. I called our diabetes team for some advice and when I mentioned the cough she told me to keep him isolated. I called his school to tell them that he was off, I mentioned the cough and was told that I should probably keep him off for the recommended 7 days.
Tuesday - Samuel was still coughing but minor ketones, husband was still being sick, and off I went to work, the girls went to school and college. 8:45 I am told that I shouldn't be in school as I and the rest of my household should be self isolating for 14 days. I phone the secondary school to tell them that Samuel is still not in. I am then advised to definitely collect Victoria, I ask about Elizabeth and am then told to come and collect them both which I do, then on to the college to collect Olivia. I then inform her that she can't leave the house for 14 days which means she can't go to work nor can she see her new boyfriend!! (I will leave up to you to imagine how that went down, it was not pretty)
Wednesday - Samuel still coughing but no ketones, husband still being sick and Olivia still furious! However, my kitchen cupboards are looking lovely and clean! Then..... I am informed that because I live in a vulnerable household I am not allowed back to work for 12 weeks!!
Fast forward to Friday evening when clubs, pubs, cafes etc are to close, schools for us are closed until further notice, and social distancing is a must!!!! But some people are not listening, yes I know you may feel ok, are young and healthy but you can still carry the virus and pass it on!

In a time when many only think of themselves please do the right thing! I have four vulnerable people living in my house!

STAY INSIDE!!!

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.