Category Archives: Personal

The 7Y2D COVID-19 Diaries – Week One

Without a shadow of a doubt, the world as we have known it has changed radically in the first 3 months of 2020. The fast spread of the COVID-19 virus not just through Wuhan, China, but worldwide has shocked us all and we find ourselves living in extraordinary times. Times that go far beyond the much-fabled “interesting times” often quoted as an ancient Chinese curse*. Life will never go back to the way it used to be for most of us, if not all and so we have to search for our normal despite not really knowing when things will start to be more “normal” once again.

Our first week at home was mostly a good one.

G and M continue with their home studies, though some days with more dedication and, let’s be honest, success than others. They’re keeping up with the extra courses they’ve both signed up to as well and we’ve found additional activities to keep them busy. G has been using the Diversity online tutorials to hone some more dance skills thanks to their 20DV website and I’ve signed M up for online tutorials for his bass guitar through Fender. Stagecoach Performing Arts has also provided some at-home online learning videos, which helps break up what can be long days.

My 12 weeks working from home is off to a good start with all finance and banking systems working well on our home wifi. There are daily conference calls with the rest of the senior management, sometimes via Zoom, to review the situation across our charity and track the progression of COVID-19 through both our staff and the individuals we support in our homes. I’ve also scheduled weekly catch-up sessions with the other members of our finance teams to make sure they are all coping okay with their new work situation. Keeping an eye on the mental well-being of all my staff is critical in times like these and they have my phone number to be able to call or WhatsApp whenever they need.

It has taken a new level of cooperation and adaption for us all. Mike is used to working from home on his own. He takes to his study in the morning, may reappear for drinks or food and then disappears again until his day is finished. M and G each have work stations set up in our dining room and manage to avoid conflict by being plugged into their own devices as they study. I have set up on the 1 remaining downstairs in the kitchen, which works brilliantly for me as I have ready access to the kettle, but can prove challenging to the rest of the family when they look to escape to the garden or make their lunch.

The last week has been filled with rainbows, working from home and trying to convince 2 increasingly grumpy teens to keep going with their own home studies…and I think we just about managed to do it all.

*There is no clear evidence that the curse “May you live in interesting times” is in fact either ancient or Chinese. It is purported to have come into more common parlance in the early 1900s, in all likelihood in the UK thanks to Sir Austen Chamberlain, brother of UK PM Sir Neville Chamberlain. You can find a good explanation of this origin here. Chinese or not, it is now widely accepted to mean times of trouble, rather than of peace,

Chasing Rainbows

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There’s no question about it, rainbows hold a special place in most people’s hearts. Whether you believe that they are a symbol of God’s promise to us to never again flood the earth to the Biblical proportions of Noah’s time, or simply a natural phenomenon that occurs when you have the perfect conditions of both sunshine and rain*; most people would agree that they are a wonderful representation of hope and promise to us all.

At what is one of the darkest moment of current times and an experience that few of us have ever even had to contemplate, yet alone live through, the rainbow has become a reminder that there are bright days to come again and that storms don’t last forever. Reportedly starting in Italy, and now spreading worldwide, in much the same manner as COVID-19 though at a much slower pace, households are creating rainbows and putting them on display in a show of solidarity.

In our village, the local FB group has been encouraging families to put their rainbows up and we have enjoyed spotting them when we doing our daily exercise routine. I will rapidly clarify that we are fortunate to live in a relatively small community and have rarely come across anyone else whilst we are out and about. And it’s not just our community that is inviting young people to get involved with sharing these uplifting images. Communities nation- and worldwide are seeing these images spring up and our favourite charity, Over The Wall, launched its first #MondayMayhem today with the challenge to create a rainbow and put it on show.

Never being ones to reject a challenge, and finding it a good alternative to the monotonies of an isolated life, G and M worked together to create their “alternative” rainbow – their teen years apparently wouldn’t allow them to be in anyway typical or predictable – which is now proudly in the spare bedroom window for all who travel the A-road past us to see. There were also some threats to paint one another’s faces rainbow-style when emotions ran a little high, but thankfully we’ve managed to avoid that, at least for a few days.

Have your children or you created a rainbow of your own to bring some inspiration and hope to others in your local area? Have you spotted any that have brightened your day? Please do share them.

*the “perfect” conditions include geometry, raindrops and being in just the right place with just the right refraction of the sunlight. There’s a much better explanation of it all here!

What does COVID-19 mean for you

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I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

#Auschwitz75

1999

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20 years ago the world was on the cusp of the new millennium. Fears were high about the possible fallout from Y2K and the dreaded millennium bug, and my Mum was not alone in stocking her under-the-stairs cupboard with enough dried goods and bottled water to see the family survive for months if the very worst actually happened. Films “Star Wars: Episode 1 – The Phantom Menace”, “The Sixth Sense” and “American Beauty” hit the big screen and we found ourselves singing and dancing along to “Tragedy”, “Livin’ La Vida Loca”, “Mambo No. 5” or even “Baby One More Time”. It was a time of excitement as we ventured into that new era with anticipation for everything that the 21^st century might bring.

20 years ago Mike and I embarked on a new adventure that was all our own. Mike had moved almost everything he owned across continents, we had bought our first house, faced – and survived – the first big challenge of life with my T1D and, on December 18^th 1999, we committed to loving each other and living together for the rest of our lives. We trusted that that commitment would bring with it much happiness, but knew that we would inevitably face challenges and sorrow too, which we would survive and could survive by being there for one another. Our vows “…for richer, for poorer; in sickness and in health…” have been tested perhaps far more than we could even imagine, but we have come through the harshest of fires and are much stronger for it.

20 years ago we celebrated our wedding surrounded by our family and friends from near and far, and even though several of those who were with us then are no longer with us, we have precious memories to remind us of their presence when we started life together. Our wedding was very much a family affair. We were married in the breath-taking beauty of our local Cathedral and were blessed to have friends from my time with the Girls’ choir there performing integral roles in the ceremony – from the Canon marrying us, to the Organist playing, the Choir providing the music and the Head Verger adding and lighting tens of tealight candles before the service to bring an extra touch of magic. Our amazing vintage car was provided and driven by the father of someone who was at school with me and a friend of my Aunt made our stunning wedding cake. Our reception venue was decorated by my bridesmaid’s mother and friends of my parents provided a Dickensian feel with their wonderful singing of popular Christmas carols before our evening reception began.

20 years on, we are not the fresh-faced youngsters we were then. Life has taken us on journeys that we never imagined would be part of our future and has, at times, battered us to the point when it would have been so much easier to just crawl under the duvet and hide, rather than face it head-on. We have weathered every storm that has come our way and somehow found a way to absolutely dance in the rain. We are stronger and braver together than we would ever have been as our separate parts – 20 years of life experienced together will do that for you.

20 years on, I am grateful for every moment we have shared. Neither of us is perfect – far from it indeed – but somehow we’ve made it work. We’ve laughed together, loved together and grieved together. We have 2 wonderful children – most of the time – and life is good.

Happy 20th anniversary Mike. Love you always and here’s to 20 more!

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Sweet Sixteen

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We did, of course, always know that this day would come, but even so, how is it that my eldest baby turns 16 today?

When I look back at the first 16 years of her life, they have not been as easy as any of us imagined or would have wished for when we first held her in our arms. I don’t think our wishes at that moment in time were for anything more than a healthy baby and a happy childhood filled with rich experiences and every opportunity we could offer her. We were determined to encourage that newborn to try her hand at anything she wanted and to reach for her dreams with a belief that she could achieve them.

It’s no surprise that life got somewhat in the way of those plans, what with the advent of her own unexpected health challenges, let alone the more demanding ones of her baby brother, and yet we continue to tell her to shoot for the stars in whatever she does. Fear and anxiety have plagued her over the last couple of years, and yet she keeps going, hopefully knowing that Mike and I have her back and will be there to not only support her, but to walk every step of her journey with her as well as pick her up and carry her if she needs us to.

To say we’re proud of G would be an understatement. Our funny, generous, gorgeous girlie may be able to throw the monster of all teenage tantrums at times – her 2 year old self had nothing on her now – but she has an incredibly gentle and beautiful spirit. She may find the stress of exams overwhelming, but she perseveres with her studies and loves nothing more than curling up with a good book or listening to music in her downtime. Her passion to dance is inspiring and she finds a true release through her movements that you can see reflected in the joy that crosses her face every time she performs, be that on stage or in the safety of her own bedroom.

As I sit here tonight, what do I wish for the next 16 years and beyond? I wish her health and happiness and a future that’s filled with dreams, just as we did when she was born. I wish her friends as well as family that will love her and support her, no matter what, and a home that’s filled with love, even when tears and anxieties overwhelm. I wish her a career that’s fulfilling and satisfying, even though she has no idea what she wants to do as yet. Most of all, I wish her every confidence to be her; to be true to who she is and to always be able to stand up for herself and for others.

Sweet 16th birthday sweetheart, we all love you very much xxx

Armistice Day 2019

15 years

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Another year gone, another year making memories that we can’t share and another year missing you. It hardly seems possible that it’s 15 years this year and yet it is.

A quiet birthday

World Mental Health Day 2019

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When I realised that this year’s World Mental Health Day was focusing on the subject of suicide and suicide prevention, I paused. I wasn’t sure that this was an area that I could write about knowledgeably and, in fact, even as I write this blog post now, I’ve got a constant thought in the back of my mind that it could be just as easy to press “delete” as it would be to press “publish” when I’ve reached the end of my musings.

I’ll be honest, suicide is not a tragedy that we’ve had to deal with firsthand. I know friends and colleagues whose families have been shaken to their very core because of the unexpected and sudden death of a loved one, but I can’t pretend to understand just how difficult it is to come to terms with that death, deal with the impact of it or find a way to somehow carry on with life “as normal”.

Can I understand what leads someone to believe that death is the only answer to their problems? Possibly.

I’ve never been in the position to feel that there is no other escape, but my own experiences with depression over the years due to my T1D, following the traumatic birth of M and the massive mental health impact of workplace bullying do perhaps give me a slight glimpse of how frighteningly easy it is to spiral downwards into the darkest of places and not know how to climb back out of that hole. Sadly, it’s been a truth we’ve also had to face with M in times when he has struggled to come to terms with the reality of his chronic illness and all the consequences that come with that; and we’ve watched G battle to overcome the challenges of having a sibling with health challenges. I’ve written about these experiences and how they’ve affected me, G and M many times and you can find those posts through searching “mental health” or “bullying” on my blog.

Today I saw this image posted on social media by our local NICU ward, a place I know well after the births of both G and M, and it perfectly encapsulates everything we should be teaching our young people about their own mental health: that no emotion should ever be considered to be wrong and, most importantly, that it’s okay to not feel okay.

7 years to diagnosis

Searching for an answer