Tag Archives: friends

Sweet Sixteen

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

A Night of SeriousFun

It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.

Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”

And this made me think.

It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.

I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.

The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.

It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.

This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.

Bluestone Photo round-up September 2019

A great weekend celebrating a milestone birthday with family. Food, fun and fantastic weather – what more could we ask of South Wales in September?

World Mental Health Day 2019

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.

Hair today…

…and gone tomorrow!

It’s an old joke, I know, but it sums up perfectly the start of the new school year for G. For those of you who’ve been following me for a while, you may remember that 2 years ago G took the plunge and decided to cut her beautiful long hair for charity. She donated the hair itself to the Little Princess Trust, who use it to create real hair wigs for children who have lost their hair due to intensive medical treatments. G also took the opportunity to raise funds for Over The Wall and it turned into an impressive occasion, leaving her with a very grown-up hairstyle as well as raising £500, which was then match-funded to create a staggering £1,000 fundraising total.

Over the summer months, G has been talking once again about wanting to cut her hair – I think the hassle of combing numerous tangles and knots out of it had all become too much – and so at the end of her second day back at school, she headed to our local hair salon and once again braved the cut. Mike suggested to her that she consider donating to the Little Princess Trust once again and as soon as she realised that there was enough length to allow her to do it, there really was no stopping her.

This time round she’s gone a little shorter than before, but it’s still an absolutely stunning style for my fast growing-up firstborn. We are so proud that she didn’t think twice about making the donation and even more so when she said that she wants to continue to donate her lengthy locks whenever she can. To paraphrase G, she wants to “…donate my hair, just like Dad donates his blood” – a fantastic ambition and who are we to argue.

Time to stop and smell the roses

New job, end of term, fundraising plans, health challenges, summer holidays… sometimes it really is nice to be able to stop and smell the roses, especially when they’re as beautiful as this bunch of flowers currently gracing G’s windowsill. A thank you from her Stagecoach school for all her help last week at their summer school – a small acknowledgement of her efforts and one that has very much been appreciated and enjoyed by us all.

We’re all taking a little time this week to slow down and appreciate life. With a couple of days off planned for the end of the week, I’m winding down to just spending some much-longed-for family time together and am wondering if I can convince the children to give up their technology for at least some of that time too. M is spending the week planning 101 things he wants to do with G before we have our break, whilst G tries her best to ignore him and focus on some gentle revision instead. Mike and I will complete as much work as we can and anything left outstanding will quite simply have to wait until we head back to our desks on Monday morning.

I hope you too get the chance to stop, take a breather and appreciate life in its fullest this week.

20 years of #mischiefandmagic

A lot can happen in 20 years.

In the years since our wedding in December 1999, our family has doubled in size and we’ve moved schools, houses and jobs at a rate that has to be seen to be believed. We’ve survived illness and loss within both our families and our friends, and continue to do so on a daily basis thanks to some long-term diagnoses that have oft-times caught us when we were least expecting them. Chronic illness has become a much bigger part of our lives that we could ever have imagined, but with that has also come some amazing friendships, connections and opportunities that we never even dreamed would happen and that, in many ways, I wouldn’t change for the world.

One such relationship that we have all absolutely come to value is the one with the charity, Over The Wall. They have been a phenomenal support to G and M since both first attended their camps in 2016 and are, in an almost unbelievable stroke of serendipity, also celebrating 20 years since they were first launched by UK businessman Joe Woods following in Paul Newman’s footsteps and the development of the Hole in the Wall Gang camps in Connecticut USA in the late 1980s.

So what are we doing to make this a year of note?

As far as our anniversary goes, I’m hoping that Mike and I might manage a night out somewhere special, though celebrating the week before Christmas can make that difficult as we negotiate the huge numbers of office Christmas parties that we inevitably encounter when trying to book a table anywhere without a lot of forward planning.

And, of course, it will come as no surprise that we are also working hard to raise awareness and funds to support Over The Wall’s ambitious plans to take a record-breaking 1,000 children to camp this year. Mike started the year in style with a sponsored polar dip on New Year’s Day and we’ve turned our hands to a few other things – some old, some new – to see just how much we can raise. We followed the “sparking joy” fashion and adopted a Marie Kondo approach to clearing out our wardrobes, committed to giving a regular amount each month and even stood in the entrance of our local Tesco superstore a couple of weeks ago to collect what we could and spread the word about the camps too.

We’ve taken OTW with us wherever we’ve travelled, sporting branded t-shirts, hoodies and bandanas with aplomb and almost quite literally went “over the wall” with them during our visit to Berlin.

G and M have obviously been a big part of many of our efforts, but are now launching an appeal of their own. Their yearning to do something truly spectacular has unfortunately been somewhat hampered by not yet being quite old enough to participate in the activity of their choice, but they have instead picked the next best option in their eyes and will be taking part in a sponsored indoor skydive at the end of this month.

How can you help?

Well, it goes without saying that any sponsorship you can give would be very gratefully received by G, M and OTW, especially if you can help them meet their fundraising target of £200 – scaled back somewhat from M’s original suggestion of £20,000 – by visiting their fundraising page here.

If you’re not able to donate, but live near a Tesco store in one of the following areas*, OTW is one of their Bags of Help Centenary Grants recipients until the end of August and by adding your blue token to their box, and encouraging friends, family and fellow shoppers to do the same, you will help them receive a significant grant that will be genuinely life-changing. Remember “Every Little Helps”, even if that’s by a blue token!

Finally, sharing the OTW message of #mischiefandmagic with friends and across your social media channels will not only help the charity reach even more of the estimated 50,000 children and young people living with serious health challenges across the UK, but sharing our fundraising page will hopefully bring even more cash donations pouring in to help them achieve their goals not only this year, but in the future too.

Thank you!

*OTW is currently starring in stores across: Perth & Kinross, Angus, Stirling, Fife, Clackmannanshire, South Ayrshire, East Ayrshire, Dumfries & Galloway, Scottish Borders, East Lothian, Midlothian, Somerset (inc Bristol), Wiltshire and Swindon.

Happy Holidays!

We’ve made it!

We almost literally limped to the end of term, but we made it, not withstanding the challenges of mock exams, shingles and Lyme disease. Homework was completed (and handed in), sports day was competed in (and won) and the last day was enjoyed in all the glory of own clothes and an early finish to the day.

We might only be a week in, but already G and M have been busy. We’ve squeezed in a couple of films they wanted to watch, the beach has been enjoyed with G’s godfather and his family visiting from Canada and they’ve kicked off this week by volunteering at our Church’s holiday club for primary-age children during the day as well as taking part in the evening’s youth club for teens.

And there are plans for the weeks ahead: G is spending a week volunteering at their Stagecoach’s summer school, a visit to London to see the musical of their choice thanks to London theatre’s Kids Week and even some fundraising for the fantastic Over The Wall which they’ve planned themselves (more details of that to follow). We don’t have a “big” summer holiday planned having been to Berlin during May half-term, but instead have decided to enjoy our local area as well as the occasional overnight visit to somewhere a little further afield in the UK.

One thing’s for certain, it’s looking to be a busy, fantastic and very happy summer holidays and I hope yours are too!

An Enriching Experience

June always seems to be a busy month for G and M and this year has been no exception to that unwritten rule. As well as the hell that was the lead up to G’s Year 10 mock exams – the exams themselves have proved to be not quite as stressful as we all feared they might be – there’s also been the much more enjoyable enrichment week for M and G’s work experience week too. Add in Live Lounge performances at school, end of year performances with their performing arts schools, we’ve finally found ourselves at the end of June and it’s time to take a deep breath, enjoy the last few weeks of school (if that’s even possible) and look forward to the summer holidays.

Last year, M was part of the school-based activities week as he wasn’t in a position to be able to consider being away from home from a health perspective and this year was no different, although the school makes the decision that all Year 8 students remain on-site, rather than being offered residential trips. After much deliberation, he was fortunate enough to be awarded a place on his first choice activity: the photography course. M really enjoys taking photos and has captured some really stunning snaps using just his phone’s camera at home. This was an opportunity to learn much more about the craft of photography itself and he spent 4 days learning about shutter speeds, taking action shots, images through water – lots and lots and lots of water! – and using light to write and capture words. He loved every moment of the course and has already decided to start saving up his pocket money so that he can buy his own camera as soon as he practically can.

The Friday was spent on a different activity and much to our surprise, he opted for paint-balling, something that has left him battered and bruised in the past. In fact, M hasn’t been paint-balling since he was hit accidentally by an adult using a high-powered weapon in the wrong part of the course at a friend’s birthday party. Whilst he wasn’t injured particularly and bounced back very quickly, the experience rattled most of the people there as M had his feeding-tube at the time and he was sore for a few days afterwards. However, the prospect of running around with a group of his friends and their plan to gang up on some of the teachers seemed to excite him and he couldn’t wait to go on the Friday even despite the rain. It was another fun-filled day and he enjoyed it all, even if he did come home sporting a rather impressive bruise to his right thigh by the end of it.

Whilst M had a week of enriching and engaging activities, G meanwhile found herself completing her work experience week. Back at the start of the school year, we had gone through a number of possible posts for her to consider and apply to for the week, but in the end she decided to spend the time working at the surveying firm as Mike. She spent her week learning how to carry out and complete property valuations, building surveys and home-buyers reports as well as the more mundane office and administration tasks that all good work placement employers expect: photocopying and shredding! Her Friday saw her spending the day at a building site and finding out about project management and property insurance claims. G very much enjoyed her week, though her diary entry for the Wednesday perhaps sums it up best – when asked “What have you learned about work this week?“, her honest response was “That it’s exhausting!