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.
…and gone tomorrow!
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.
New job, end of term, 
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.
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.
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!
I had spotted that that 1 bite was still in situ and now sporting a rather angry-looking red rash around it, so determined it worth getting that checked out whilst we were there too. Add in the fact that one of M’s classmates had been diagnosed with shingles the week before and I had yet one more thing swirling around the back of my head as something else to be mentioned as well.
However, it was the bite that really raised our Dr’s eyebrows and after a few probing questions from both him and me, I had a sneaking suspicion that I knew where we were headed with this rash. One week on, a 5-day course of anti-virals to treat his spreading shingles rashes and the third doctor’s appointment of the week, there was no question what was going on with M. The red rash circling his bite had become the most perfect bulls’eye rash and 
This week is Mental Health Awareness Week (#MHAW19) in the UK and the focus this year is on 
It’s taken me a long time to become comfortable with the way I look. I am not a size 10 having, as I have often said, passed through it on my way to bigger and better things. I struggled as a teen being taller and bigger than some of my friends and again as a new Mum, when some of my antenatal group bounced back to their size 8 jeans within a ridiculously quick space of time, something I was never going to achieve. The depression that has haunted me since my early teen years didn’t help with my sense of self worth and it has taken me 40 years to finally accept that I am the way I am and that that is enough. That doesn’t mean that I don’t occasionally have a crisis of confidence even now, but I have learned to wear clothes that flatter my shape and can truly step out with confidence when everything comes together to help me feel good about the way I’m presenting myself to the outside world.
There is no question that G is the spitting image of Mike and his side of the family, which gives her beautiful tanned skin and dark hair, although her build is very similar to mine. She has struggled at times with not being as slender as some of her friends and these days complains that she appears to have stopped growing whilst her friends are still inching past her. She is a beautiful young lady on the inside as well as out and we encourage her to find her worth in the way she behaves and reacts to the people who are around her and not her physical looks. We have all heard the criticisms of both print and social media and the airbrushed images that all too often create unrealistic expectations in our children and young people. The increasing popularity of taking selfies and then using social media filters to manipulate the image presented to the world can add to our unrealistic perceptions about the way we should look. I still remember a discussion we had with one of the paediatricians when she was little, who told us that the danger these days is that our perceptions and expectations of body shape and size are such that we fail to recognise when people are a healthy weight for their height and instead view them as overweight. G is learning to eat healthily, keep active, believe in herself and, most importantly, to not constantly compare who she is to her friends.
It is easy to believe therefore that if you’re slim you have no reason to have body image issues, but I can tell you that’s not true either. M is the complete opposite to the rest of us and has always been on the slender side. He is chatty, witty and can ooze absolute self-belief at times, and yet he has struggled with feeling too thin, too short and lacking muscles when compared to some of his friends. He refused to wear shorts during his Junior school years, even when the weather was gloriously sunny and we asked for permission for him to wear jogging trousers rather than shorts for PE – all because he hated the way his legs looked. These days he’s a little more prepared to reveal his legs, particularly when it’s too hot to be comfortable in jeans, but he frequently comments on just how much taller than him many of his classmates are.
are M-friendly as well as delicious, but I have made some lovely friends along the way and the judging sessions are always the best opportunity to do some much-needed catching up over food and a cup of tea.
Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.
That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.
With just a smidge over 2 weeks to prepare for this madness, you wouldn’t be blamed if you thought Mike was completely mad – believe me when I say it was something that went through my mind too – but the reason for it is actually a fantastic one.
7 years to diagnosis 