Tag Archives: community

Easing Lockdown – 7Y2D COVID-19 Diaries Week 11

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How things have changed in the last week in the UK. The government announced that we could start easing the lockdown measures that have been in place since the end of March, a decision that has received mixed reactions from across the country. Changes have been discussed at the daily briefings, or published via press releases late at night, and all too frequently there has not been sufficient detail or further explanations provided to give comfort to anyone expressing concern that maybe we’re moving ahead too quickly when considering current statistics.

As lockdown eases, I’m able to continue to work from home for the time being, which has been especially reassuring given the recent publication of scientific research into the risk of COVID-19 on those living with diabetes. We had all been advised that those living with underlying health conditions were at higher risk during the pandemic, but the evidence suggests a particular link with diabetes and other health factors, some of which are relevant to me, others that aren’t. I won’t be changing the way I’m working at the moment and continue to limit myself to being at home or out for a walk in the area surrounding our village, somewhere I haven’t left since lockdown began.

Both G and M continue with their homeschooling and it was confirmed just before half-term that neither of them will return to school before September at the earliest. We continue to balance school-work with other activities to keep them entertained during the day, but they are yearning to spend some time with friends, although they do understand why that just isn’t possible at the moment. Our old trampoline finally gave up the ghost with a number of springs popping off in the first few weeks of lockdown, but we managed to get an order in for a replacement one and M has been waiting eagerly for it to arrive. The delivery finally happened at the start of this week and the introduction of a 16 foot trampoline to our paddock is certainly a sight to see. G and M have already been out bouncing as much as they possibly can and it’s definitely big enough to accommodate them both at the same time.

The biggest change with the easing of lockdown is for Mike. Having been furloughed on 1 April, he has spent the last couple of months doing a number of DIY jobs around the house and garden, but that is now coming to an end as he starts back at work tomorrow. This has come with its own set of concerns, not least about how Mike can best protect himself to minimise the risk of him bringing COVID-19 home to either M or me. We have agreed a process whereby he will change in the garage as soon as he gets home from work, put his clothes straight into the washing machine and will then come in and go straight to the shower before coming into contact with the rest of us. He has also been provided with a supply of PPE to wear throughout his day as he travels between houses to complete surveys and valuations. Finally, as I have taken over his study for my home office, he will be using the desk in the spare bedroom for when he needs to work on his reports.

What does the lockdown easing mean for you and your family? Are you returning to your new version of “normal”, or taking a more cautious approach for the next few weeks? Whatever you’re doing, stay safe and keep well.

Community Spirit – 7Y2D COVID-19 Diaries Week 10

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The one thing that has been much talked about during the lockdown has been the community spirit that has bee thriving around the UK. I don’t know what it’s been like near you, but our village has pulled together in so many ways, which has been lovely to see. Some arrangements have been purely practical, such as shopping or picking up prescriptions for the vulnerable, whilst others have been shared activities to do at home that have been aiming to raise a smile and give locals something to see and do.

Our village, like so many other communities in the UK, has seen a COVID-19 related support group springing up on Facebook, which has shared local information such as shop opening times as well as offering support to those most in need. Our local foodbank has seen a huge increase in demand and so many in our small community have rallied around to provide the tinned and packaged goods that will make a huge difference to those struggling to feed their families. Similarly, our parish council has co-ordinated efforts to make sure that groceries and prescriptions are collected and delivered to our elderly and vulnerable residents.

Local schools in the area have donated their unused PPE to healthcare organisations and many of the secondary schools have worked to produce face visors for any who have needed them. The charity I work for has benefitted from this in particular as we run 18 residential and supported-living homes across the region supporting adults with learning disabilities and, thanks to the generosity of a number of these local schools, we were given 120 face visors for our care staff to use to keep them safe as they do their everyday job.

Every Thursday, our community has come out to join the national #clapforcarers and we’ve seen more of our neighbours in the last 10 weeks than we normally do in an average year! We live right at the end of our village, so are fairly remote, but each week has seen more and more families joining in our thanks and recognition of those who have worked throughout lockdown to keep us safe. Mike and I have also been out on some of our daily walks when the #clapforcarers has happened, and have loved seeing how other streets in our village have been banding together – at an appropriate social distance of course – at this time too.

There has also been a plethora of community art projects happening, both in our village and on a national, or even worldwide, level. It started with the rainbows 11 weeks ago, many of which are still gracing the houses we pass each day on our walks and, for us, has now moved on to a scarecrow trail. Mike, G and M made our original scarecrow for VE day, but with the suggestion of a village-wide trail, “Gerald” has been updated and adapted to remind all who pass our house to follow the guidance on social distancing and protecting the NHS. We’ve spotted several other masterpieces as we’ve ventured around the streets, my personal favourite being the one collapsed on top of a hedge with an empty can of beer in his hand and a simple sign stating “After Party”.

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!

 

Be my Valentine…and #SpareARose

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How did your day start today? With a card, chocolates or maybe a bunch of flowers? A promise for dinner tonight? Or maybe tonight will just be a quiet night in front of the TV.

You can’t have missed that it’s Valentine’s Day today and you may, or may not, be celebrating it.

Whatever your plans, could you please do just one more thing?

By gifting the price of one single rose (£4) to Life for a Child, you will be helping the Diabetes community to “take care of one another around the world” and giving one month’s supply of life-saving insulin to child living with T1D in an under-resourced country.

It really is that easy and what a wonderful gift to share with your loved one this year.

Happy Valentine’s Day!

Exploration through Enrichment

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One of the things I love about G and M’s secondary school is the Enrichment week they run in June. Every year the young people are encouraged to explore new activities and opportunities during the week and try their hands at things they perhaps haven’t had the chance to experience before. When G was in Year 7, she opted for Bush Camp – an African-style adventure that involved 4 nights away from home sleeping out under canvas with campfire dinners, quirky showers and earth toilets for her home comforts. If there’s one thing that proves my daughter doesn’t always follow in my footsteps, this choice was it as I am a reluctant camper at best and it would take an awful lot to convince me that this could be considered as a fun week away from home. However, G loved every moment and couldn’t wait to choose her options for both Years 8 and 9.

Whilst G had determined that this year was going to be the year for a week away at pony camp in the Brecon Beacons, M’s choices were limited by the reality that he wouldn’t be able to spend a week away from home. We made the decision right at the start of his Year 7 year, not wanting to put him through once again the trauma of last-minute decisions and the inevitable disappointment that he experienced when we had to conclude that he couldn’t go away to the end of term Year 6 camp last year. We opted that M would be based at home for the week and instead he had to  the activities that he would participate in during the school day.

M decided on Action Adventure, where he got to try his hands at high and low rope courses, archery, building a trebuchet and bush-craft skills over the first 3 days of the week. Day 4 was designated as a community day, which was designed to give the children an opportunity to understand their role in our local community and to give a little something back. Some children did bag-packing at a local supermarket, others chose sponsored activities to raise money for local charities and M’s group of year 7s built wooden bird-boxes to be put up in the grounds of their school.

On his final day, M was keen to join the trip to the Tamworth snowdome, although he was disappointed that he had to ski, rather than being able to show off his rapidly improving snowboarding skills. He has been learning to snowboard since Christmas and has been coming on in leaps and bounds on the artificial slopes. He didn’t find it as easy to ski as he had hoped and the combination of time spent focused on skiing and ice-skating meant that he and his friend slept on their way back home. Both children had a great enrichment week and I’m grateful that this fantastic opportunity has been available for them both to fully experience, explore and enjoy. Not only am I impressed by the variety of opportunities they have to choose from, but the school did a great job of keeping the parents of around 900 students updated about their return home on the final day, which is no easy feat!

#NEAW2018: T is for Thank

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May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

NEAW2017 – Resilience

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Resilience: the ability to become strong, healthy or successful again after something bad happens.

What an amazing quality to possess and one that we’d all to like to develop, especially when times are tougher than we ever imagined they could be. Without a shadow of doubt, the EGID diagnosis has forced us all – and by us, I don’t just mean our family, but all those families living with EGID – to become incredibly resilient, even when we’re dealing with bad situations that have nothing to do with this illness itself. During last year’s NEAW, I wrote about being an EGID Mum and the heartbreak that I had been struggling with because of M’s broken leg and the lost opportunities that resulted from it. This year, the current uncertainty surrounding the validity of the EGID label has once again pushed Mike and me to our limits as we grapple with the challenge of managing the health of our child, physical and mental, whilst also dealing with the unavoidable “elephant in the room” of that unanswerable question mark about his diagnosis whenever we attend gastro appointments that seem to try and avoid using EGID as a valid reason for his current struggles. We are not the only parents who find themselves in this position as conversations amongst our EGID friends and extended family show.

Life has taught me to be resilient, to be a strong woman who’s not afraid to face up to whatever is thrown at me, even if sometimes I need to pause and take breath before I can fully deal with it all. It sometimes feels as if I’ve been put through more than most: my T1D diagnosis on my 9th birthday, losing my Dad before he had a chance to get to know my children and the threat of further sight loss last Christmas; and yet somehow I’ve managed to find my way through it all. As a family we’ve certainly had more than our fair share of chronic illnesses to contend with – T1D, EGID, Cancer, Parkinson’s, MS, Alzheimer’s disease to name a few – but they’ve taught us all one thing: that we can survive. In fact we can do more than survive, we can still have positive, purposeful lives and can definitely live and enjoy life to the full.

As a Mum, I’m proud to see the resilience that my children are building themselves, even though it is heartbreaking to realise the reasons they’ve needed to develop this character trait so early on. But their unquestionable resilience to life’s challenges, doesn’t mean that they are immune to the insensitive, hurtful and thoughtless comments of others as became patently obvious this week. M is going through a tough patch right now and we don’t really know why. We expected the anxiety of his SATS last week to affect his gastro health and returned to his simple 6-food diet to try to reduce the stresses on his body. This week has seen a real relapse in many of his symptoms and we’re struggling to see the light at the end of this immediate tunnel. I know, in that way that Mums do, that this change in events was playing on his mind, but I didn’t realise just how much until yesterday.

Yesterday, we were talking about his school year group and in particular, the jokes and insults currently being traded amongst the Year 6 boys. I reminded him that he needed to ignore those comments as best he could and instead focus on the strengths of his friendships and the fun they’re now having that SATS are finally out of the way. It was then that he paused in reflection before saying:

“…I know Mummy, which is why I’m sure X was making it up when he said that his Mum had said that she’s sick of seeing me in the local paper all time because I haven’t been and anyways, I don’t think that his Mum would have said that….would she…?”

I had to take a moment to compose my own thoughts before giving a careful and considered reply because I knew that the very fact that he had mentioned it to me meant that he was more bothered by this seemingly throwaway comment that he wanted to admit. In all honesty, I can’t answer why that Mum said that, though I can make some intelligent assumptions behind her reasoning and am certain that she never expected her child to come into school and say it directly to my son. It just shows that we need to be careful about what we say to, and in front of, our children and encourage them to be kind in their words to others.

I reminded M that our intentions are good. We’re actively trying to raise some much-needed awareness about EGID and that the annual fundraising events that he’s held at school have been the result of us proactively asking to organise them. I’m not ashamed to speak out loud about a condition that impacts us every day and I don’t want M to feel that he needs to hide the reality of what he goes through. However, he also knows he can share as much or as little as he chooses about his daily life and that there will never be pressure from us to do more than he’s comfortable with doing.

We’re lucky. Having spoken out loud to me, and then later to Mike, about this comment, M has forgotten all about it and has happily got on with the rest of his week. His ability to bounce back after a ill-considered remark that obviously cut deep is admirable and truly reflects the resilient young man he is growing up to be. Today both children have proudly gone into school wearing an element of pink to raise awareness amongst their friends. M’s “Dress up as your hero or superhero” day for Over The Wall is currently under way and he was excited to see what his friends would be wearing – he has gone as his very own hero, Ryan (the doughnut man) from Borough22. Most of all, we’ve all done our bit this week to show this disease just how resilient we are and I’m proud to acknowledge that many in the global EGID community have done so too.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW 2017 – No man is an island

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Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW 2017 – Shared Experience

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If there’s one thing the last few years have taught me, it’s that it is truly worth reaching out and sharing the story of our experiences, as it is thanks to those who have had the courage to share their stories with us that we have found the strength and courage to persevere and carry on, even when the hardest of decisions have had to be made. Talking about the challenges that have faced us, sometimes on a daily basis, is unquestionably therapeutic and can often be a self-centred process, but I’ve learned that sometimes, when I’m speaking about a moment that represents only a small part of a much larger picture for us, that is the thing that speaks most into the heart of a matter that is a seemingly insurmountable one for another family. I’m grateful for those who have taken the time over the life of my blog to get in touch and let me know that a post I’ve written has sometimes made what is, for them, a big difference at that time in their life.

Today is the start of National Eosinophil Awareness Week 2017 (#NEAW2017), our fifth year of finding new ways to talk about EGID and telling those in our community, and beyond, about this disease. Last year, we went all out with our approach to raising awareness and raising funds for the charity, Over The Wall: I appeared for the third year in a row on our local BBC radio station, talking about life with M and with EGID, and our local paper also ran another story highlighting what we were trying to do. We attended some community summer fairs to hand out leaflets about EGID as well as running some mini carnival games to boost our fundraising total. M took some of those games into his school and shared in assembly the short film that he and G had created to explore the impact of EGID from his point of view. Likewise, G’s secondary school offered their support and ran a Year 7 non-uniform day and asked every tutor group to show their film. We extended our fundraising efforts past the third week of May and, with the help of our regional theatre who kindly agreed to have collection buckets available for 2 weeks at the end of each performance, we managed with the help of the wider community to collect more than a staggering £1,000, which I not only know will have been put to good use, but have seen in the fantastic OTW South Siblings Camp that G attended for the second time just a few weeks ago.

This year we’re taking things a little easier, though I’m still planning to write a blog post a day for the week and as a family we’re once again taking on the challenge to “Eat like M” for the duration. Our week starts with another radio appearance, with this year marking the debut appearance of M, and G if she deigns to give more than her usual, teenage monosyllabic answers on air. I am filled with some slight trepidation as to what might come out of their mouths as they speak live during the programme, but I’m looking forward to hearing what they both choose to share about life with EGID. As M’s career at his incredible Junior school draws to an end, the Headteacher has agreed to support our awareness-raising campaign for the final time and is helping M to host “Dress as your Hero/SuperHero” for the day on Friday May 19th.

We have also asked for donations of any unwanted fancy dress costumes to send to Over The Wall as part of their appeal this year. They are looking to replace as much of their existing stock as possible for camp and whilst they are grateful for any and all that they receive, they are particularly looking for costumes to fit teenagers and adults. If you have some lying around your house and want to help support this amazing charity, you can find the Head Office address to send those costumes to here. All in all, I have no doubt it will be another busy week, but hopefully a good one too and of course, you can all do your part to help us by sharing my blog posts wherever you can to reach out to your community and share our EGID experiences.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.