Tag Archives: EGID

Greece Photo Round-up 2017

Making the most of our 10 days in Greece was everything we needed it to be this summer. It’s been a big year: with me changing job, G becoming a teenager, M taking SATs and the move to having 2 children at secondary school; and we all appreciated the chance to escape from the day-to-day and spend some precious family time together relaxing and enjoying each other’s company. From the ancient monuments in Athens to the beauty of Syros, Greece was an amazing holiday destination and one place we would love to return to again.

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Unexpected Greek Treats

We might have packed a suitcase full of a variety of allergy-friendly foods to keep us going during our 10 days in Greece, but, as ever, we kept our eyes open for any M- and G-friendly Greek treats that we could spot in the supermarkets. delicatessens and local shops in Athens and on Syros. I had no doubts that we could find the bare essentials of soya milk, goats’ cheese and rice, but it’s those unexpected finds that make all the difference when we’re travelling as a family.

The first fantastic find, and one that we found ourselves stocking up with to last the duration of our stay, was this unassuming pack of smoked chicken fillet that quickly became a firm favourite with M. Mike had ventured out of our Athens studio one afternoon and found a delightful small deli less than 5 minutes walk away. They had a huge selection of fresh and dried olives, oils, cheeses, breads and cooked meat, but it was the smoked chicken that caught his eye as we had been struggling to find an appetising way to cook and serve chicken for M, who is not the biggest fan of cold chicken at the best of times. The smokey flavour was something new to him and whilst he was prepared to let the rest of the family have a small taste to see just how delicious it was, he insisted that the remaining slices were his and his alone. Mike also discovered these brown rice cakes with pink Himalayan salt, a surefire hit with M and the perfect base for his smoked chicken fillet sandwiches that became a lunchtime staple.

As we had expected, we had no problem in sourcing goats milk, butter and cheese for G in Athens and were also delighted to find both almond and hazelnut milk there too. She quickly fell in love with the traditional Greek Feta cheese and ate it as frequently as M devoured the chicken fillet for lunch. We also found a small selection of gluten-free crisps that they both enjoyed on occasion as just a small snack when needed. However, it was on Syros that we were truly amazed by the unexpected plethora of allergy-friendly foods we found in the very small supermarket in the seaside village of Finikas. When we ventured inside on our first day on the island, we were hoping that we might be lucky to find some soya milk for G to drink and were completely blown away by this astonishing selection of dairy-free alternatives, from almond milk to chocolate soya milk, goats cheese, butter and yoghurt, and the one item we had never expected to find there: rice milk.

This tiny treasure trove also stocked a small, but comprehensive selection of gluten-free products including rice cakes for M, gluten-free pasta, bread and biscuits. We bought a couple of different flavours of the allergy-friendly biscuits that quickly became a favourite with G. These were a welcome treat and alternative to dessert for her especially when accompanied by some small slivers of Feta, whilst M enjoyed the opportunity to pick and devour fresh figs from the trees surrounding our villa at the Good Life. Having discovered these unexpected Greek treats, we made an effort to buy a few extra packs of biscuits and rice-cakes alike to bring back home with us to keep the memory of our Greek adventures alive for just a little longer.

Eating Out with Allergies in Greece

It feels a little as if this is becoming a mini-series in itself: a list of the countries where we’ve successfully managed to find a safe way to eat out with food allergies with both children. In the last year, Mike and I have been impressed by the options we have found in both Italy and New York whilst travelling without the children and our summer in Portugal last year was a great success thanks to the freefrom choices we uncovered there. Our decision to venture to somewhere new this August meant we had to adopt our usual 3-prong approach to travelling with food allergies:

  1. Pack an extra suitcase with the bare minimum of everyday essentials that we will need to cater for both G and M in our self-catering accommodation;
  2. Relax the rules a little for M and allow him to enjoy the full Greek experience on occasion, whilst keeping him strictly to his restricted diet the rest of the time; and
  3. Be prepared by doing some research about restaurants in advance and be willing to explain at length numerous times just how restricted his diet is.

Our careful planning ahead meant that we were all able to eat 3 meals a day without too much stress and we achieved some great successes along the way. We had started a new approach to food trialling about 6 weeks before we travelled, whereby we chose 3 foods to challenge M with over a 3-month period and had strategically picked the ones we thought would be of most use whilst we were in Greece. This is the 3rd way of food-trialling we’ve tried over the last 12-18 months, all with the support of our local hospital, and whilst I still have my concerns about whether this really is the best approach to take, it did allow us more flexibility that we’ve had before. M decided he wanted to trial olives, prawns and bananas and these seemed a good fit with our Mediterranean break.

We found several highlights in Athens, including our perennial favourite, the Hard Rock Cafe, where we ventured on one of our more relaxed days to the topic of M’s restricted diet. He enjoyed every mouthful of his gluten-free burger and chips with great gusto and even though the increased dose of medicines we had agreed with his consultant before we went didn’t fully tamper down his body’s response, it was a real treat for us to see the delight on his face when faced with something a bit different to the varieties of chicken, rice and cucumber that he’s become accustomed to at home. The waiting staff worked hard to accommodate our additional requests around making sure the meals were also dairy-free and the vegetables added to the plate were restricted to just cucumber for both children as we had asked.

When you wander through the Plaka in Athens, you are surrounded by a huge array of small tavernas to choose from, ranging in price and, if I’m honest, authenticity. It was surprisingly easy to cater for M at nearly all of these and the ones we ended up eating at were delightfully keen to prove themselves to us. Every menu seemed to contain grilled chicken and rice and it was just a case of just how much of an accompaniment they were able to serve, with most preparing small salads of cucumber, apple and pear. G tended to play it safe and opted for the easy option of steak and chips – or sometimes steak and rice – though we did manage to convince her to try mouthfuls of our more authentic Greek dinners, which she reluctantly had to admit to enjoying despite herself and her preconceived ideas! One evening we even found a restaurant serving gluten-free pasta and G enjoyed a delicious spaghetti bolognaise, albeit in the wrong part of Europe.

We didn’t really eat out too much on Syros as we instead took advantage of the beautiful local produce that Nick had kindly sourced for our pantry at the Good Life and spent time preparing, cooking and enjoying simple meals at our villa. However, we did choose to eat some lunches at the beachside restaurants and this is where having olives and prawns as a menu option really came into its own as M indulged in some delicious meals including those tasty morsels, whilst munching on the Greek rice-cakes we had managed to buy in both Athens and Syros.

Living the Good Life

Are you more “Tom and Barbara” or “Jerry and Margot” when it comes to your approach to life? There’s no way I could let a reference to this unforgettable 70s British sitcom pass without a gentle nod in their direction, but my blog post is actually all about our exceptional retreat in Syros during our recent Greek holiday. Somewhere that embraces the self-sufficient lifestyle of the Goods and yet provides an experience that even the pickiest Leadbetter would struggle to complain about.

The Good Life Greece is owned by the charming and laid-back Nick, who, despite having called Greece his home since 2004, still speaks with a distinguishable Australian accent and, with the help of his sons also set up a number of small businesses in Athens, including our base whilst we were there, the Athens Studios. Escaping the noise and busyness of the capital city, the Syros villas match the peaceful beauty of their location and gave us a chance to recharge our batteries whilst embracing the simplicity of Greek island life.

Our home for the week was the idyllic Balance villa, a traditional stone house surrounded by vineyards and olive groves. Carefully designed to be sustainable and eco-friendly, the villa was simple with an understated luxury that we all enjoyed. The children were welcome to pick vegetables, hunt for eggs and harvest the figs on the nearby trees; and enjoyed every moment as they explored the grounds around the villa. With 2 bedrooms, a kitchen I’d love to have at home, bathroom and spacious living/dining area complete with TV and DVD player, there was more than enough space to house us all without risk of getting in each other’s way. A beautiful stone patio circled 2 sides of the house with amazing sea views, which we enjoyed on our quiet Sunday “at home” when we spent the day playing card games, listening to music and soaking up the sun in absolute peace.

Before we arrived on Syros, Nick and I had exchanged a couple of emails and I gratefully accepted his offer of a pack of local foods to welcome us to the island. I was so delighted by this decision when we discovered the wonderful array of goodies that filled the fridge and pantry. Fresh fruit and vegetables, goats’ cheese, yoghurt and milk for G, local sausage, cooked meals and chicken kebabs for M as well as eggs, fresh bread and, most importantly, local beer and wine gave us everything we needed for the first few days. Nick also hosted a wine-tasting evening mid-week, where he introduced us to a number of fantastic Greek wines accompanied by a spread of delicious local foods. We met our Dutch next-door neighbours, whose 11 year-old son quickly became great friends with both M and G as well as a willing partner-in-crime!

We loved every moment of our holiday on Syros and would go back in a heartbeat. I am particularly tempted by the thought of a Christmas spent there and, who knows, maybe we’ll make it back before too long.

Marks out of 10: 10/10 without hesitation

Our Syros sojourn

What better to do after a busy few days walking thousands of steps to explore all that Athens has to offer, than escape the city and head to one of the many Greek islands for a change of scenery and of pace? Mike and I were keen to avoid the busier tourist destinations such as Crete and Rhodes and M expressed a desire to visit a smaller island which still gave him and G plenty to do whilst we were there. Once again our choice was somewhat dictated by the decision to stay somewhere with self-catering facilities and a few hours of careful internet research led us to the idyllic island of Syros, capital of the Cyclades islands.

It is possible to fly to Syros from Athens, but we decided to take the more scenic travel option and something that would feel like more of a new experience to G and M. The last time we travelled by ferry was when we holidayed in Ireland about 8 years ago and M has no memories of that trip at all. This time we went as foot passengers, which would perhaps not suit those who prefer a more organised and less Greek approach to boarding than was offered, but it more than met our needs. I had taken the precaution of booking seats for both our outward and return journeys, which proved to have been a sensible decision as the Blue Star ferry was incredibly busy and filled to the gills with people making the 3.5 hour trip. M was, for some unknown reason, particularly delighted to find that I could have a coffee whilst we were sailing and insisted on taking the photo below for my blog to show that, for me, it apparently really is “all about the coffee”!

       

We were lucky to find, and be able to book, what turned out to be a truly spectacular villa for the duration of our stay on Syros. The Good Life Greece is located in Poseidonia on the west coast of the island, just a short drive away from the main port and island capital of Ermoupoli. Although we toyed with the idea of renting a car for part of our stay, we decided in the end to spend the week vehicle-free and instead arranged with our host, the charming Nick, that he would meet us at the port and take us, and all our luggage, to our final destination. There are just so many great things to say about the wonderful villa that became our Syros home that it would be impossible to do it the justice it deserves in just a few words, so my review of our accommodation will follow in a separate blog post.

However, what I can talk about are the peaceful beaches, glorious weather, incredibly blue sea and delicious food that filled the remainder of our holiday and really rejuvenated us all. We were able to walk to 2 nearby beaches at Voulgari and Finikas and one day hopped on the local bus to journey less than 15 minutes along the coast to another sandy gem at Megas Gialos. Having spent the last couple of summers near Alvor in Portugal, these Greek beaches were a complete revelation to us and one that I think might be hard to give up in the future. My favourite beach destination on the Algarve is the beautiful Burgau, which I love because it tends to not be too crowded and the distance between sun-lounger and sea just about allows me to watch G and M without having to venture in, and out, of the sea myself. The 3 Greek beaches we discovered on Syros were just like Burgau, but even better!

Not only were all 3 far closer to our villa than we imagined possible, but even in mid-August, there was always space for us to set up camp and find enough shade to shelter in during the hottest part of the day. No matter what time we arrived at the beach, from mid-morning to early evening, we almost always were able to find either one of the fixed sun umbrellas or a tree to set up camp under and even if that wasn’t immediately possible, a space would open up within the hour. This part of Syros was welcoming and friendly and so we felt perfectly comfortable leaving our belongings – though nothing more important than beach towels, sand toys and books – on the beach to save our spot whilst we disappeared off to the nearby taverna for some lunch or a cold drink or both.

For anyone thinking of a holiday in Greece, we would all highly recommend Syros as we had a fantastic time just relaxing and enjoying what was on offer. We chose to not spend too much time on the go as we felt we had done that in Athens, but both children were able to try their hands at paddle-boarding at our local beach and I understand sailing and windsurfing lessons are also available in the area. Syros really did feel like a home from home and we would go back in a heartbeat.

 

 

Γεια σαυ Αθήνα

It could appear that I’ve been keeping our final summer holiday destination close to my chest, but hopefully the title of this post will have given you some idea of where we headed to get a healthy dose of natural vitamin D and a much-needed complete break from it all. We decided to head somewhere that the children had never been and a country that Mike and I had last visited close to 17 years ago: Greece.

For those of you not yet fluent in the Greek alphabet and language, the above words say “Hello Athens” and that was how we chose to top and tail our trip to this beautiful Mediterranean country, with a few days spent soaking up the history in the capital city. Our early flight from Gatwick meant that we had reached our hotel by mid-morning and were soon ready to get started on our explorations. We stayed at the centrally located Athens Backpackers hostel, which was only a few minutes walk from both the Acropolis and the Plaka. The double set of bunk beds in the bedroom might not be every family’s idea of a great start to a holiday, but we wanted something that gave us easy access to all we were hoping to see in Athens and were delighted with our choice. With a spacious living area, small, but well equipped kitchen and the all-important air-conditioning, this family studio apartment was everything we could have wanted to start off our holiday.

Following in the tried and tested footsteps of previous holidays, our first destination was to buy tickets for the Athens City Sightseeing bus tour and having stopped to grab a quick lunch, with mediocre success meeting the allergy needs of G and M, we set off around this ancient city to pinpoint exactly where we wanted to visit over the next couple of days. One of the highlights of our city stay was, without a doubt, the Panathenaic Stadium, site of a simple racetrack for the original Panathenaic games and latterly home of the first modern Olympics in 1896. It somehow felt fitting to visit this Olympic stadium following so shortly after our trip to the Queen Elizabeth Olympic Park in London for the 2017 IAAF World Championships and M in particular was keen to soak up the history by listening to their comprehensive audio tour. One of the hidden gems there for me was the small museum that housed a number of posters, artefacts and torches from several Olympic Games over the last 120 years. G and I took our time walking around this single room housing numerous treasures and delighted in spotting the posters and torches from all 3 London Olympics Games: 1908, 1948 and 2012.

The children also enjoyed our stop at the Monument of the Unknown Soldier in Syntagma Square, where we watched the changing of the Hellenic parliament guard, who are known as the Evzones. This ceremony is impressive to watch, not only for the incredible historic costume, but also the slow, careful and measured movements that the soldiers make as they take up their official posts for the next 60 minutes.

Travelling to Greece in August had its advantages. Not only did we enjoy constant sunshine and temperatures that could sometimes be stifling in the city, but most Athenians have also gone on holiday and so the queues and crowds were not as big as they might otherwise have been. The one downside was that our holiday coincided with the Feast of the Assumption on August 15 and we were warned that many shops would be closed on the day. However, we planned our day carefully by having a good supply of food in our apartment for lunch and fulfilled M’s desire to visit a local playground, which we found quietly hidden in the beautiful National Gardens located just behind the Parliament buildings.

The holiday starts here

Our trip to London to see the World Athletics had been planned with careful precision to fit in with our much-longed for summer holiday. Whilst we usually try to fly from our local airport, which is a mere 10 minute drive door-to-door for us, we took advantage of being in the London area and instead arranged flights from Gatwick for early on the Sunday morning. I scoured the internet looking for a nearby hotel and parking package, which would allow us to get a few hours sleep before we travelled and included parking for the duration of our holiday. Much to my delight, I managed to find a fantastic deal giving us a night’s stay at the Holiday Inn Worth and valet parking at Gatwick’s North terminal – ideal when your Sunday morning flight requires you to be at the airport for around 2.45am!

It took us a little longer than hoped to journey across London from Stratford and out to Worth, so by the time we arrived, all we really wanted to do was move a couple of key belongings from one case to another, pack our hand luggage for the flight and have dinner before heading to bed for as much sleep as we could manage ahead of our middle-of-the-night wake-up call. Whilst I sorted the cases and G and M emptied, sorted and repacked their backpacks, Mike was tasked with the job of investigating the hotel restaurant to see if we could just stay put and successfully feed both children there, or if a quick internet search was required to find somewhere safe to eat in relatively close proximity. Thankfully the hotel restaurant, Lytton’s Bar and Brasserie, assured us they could cater for both children, despite the seeming lack of allergy-friendly options noted on their menu and so we settled down for an early dinner.

G opted for her perennial favourite of a medium steak with salad and chips, which we had confirmed would be okay for her, whilst the chef worked his magic to prepare grilled chicken with pilau rice and a side of cucumber for M. For those slightly more eagle-eyed amongst you, you might notice that there were some peas mixed into M’s rice, something that is definitely not yet on his safe foods list. We had agreed with our local gastro consultant that we would relax M’s restricted diet a little when away and whilst we might not have necessarily chosen to kick that trend off before we even left the UK, sometimes you just have to go with the flow and live life to the fullest. By the time we got to the end of the meal, both plates were more or less cleared and we were delighted to have once again found a great option for an allergy-friendly meal without too much hassle.

Mike quickly fell asleep, but the children and I decided to lie in bed watching the relay finals and celebrated quietly the huge success of the British squad, whilst commiserating over the unexpected injury of Bolt, who we had seen perform to his usual phenomenal standard that very morning. Excitement over, we drifted off to what little sleep there was left to grab before my alarm went off 1.35am and our holiday really started. We made it to Gatwick in good time and got ourselves checked in without too many problems around the extra suitcase of food and medicine that we had once again arranged to carry free of charge with Easyjet. Both G and M managed extremely well given our early start and we were soon to be found sitting in the airport Starbucks, enjoying our drinks of choice and playing a few rounds of the newly acquired Marvel Avengers Top Trumps and other travel games. Our holiday adventures were about to begin!

Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

Bitter disappointment

Two years ago, M and I waved goodbye to G as she trekked off on the adventure that is Year 6 Camp and, as he had his NG-tube in place, we chatted about whether Year 6 camp was a possibility for him. I reassured him that Mike and I were both keen for him to go and would work hard with the school to ensure that his every need – medical, dietary or otherwise – was met as he needed, whether the feeding tube was still in place or not. Despite never having spent a night away from family, M wanted to go, to try out new activities and to challenge himself as opportunity offered.

One year ago, as I manoeuvred M’s wheelchair through the back gates of school and across the school field to his classroom, we breathed a sigh of relief that it was during Year 5 that he had spectacularly broken his left leg and not in the weeks leading up to the Year 6 camp. The slow reintroduction of foods following the removal of his feeding tube would not hold him back and once again I found myself reassuring him that, if needs be, I would bake a batch of M-friendly cakes or cookies to accompany him on the trip and that we would ensure that the camp kitchen could safely cater for whatever his food requirements were when he went. His week away at Over The Wall built his self-confidence as he realised that he could tackle anything he put his mind to and succeed.

For the last 2 years, M has been looking forward to this rite of passage, this week of school camp and practically counting down the days until it was finally his time to go. He has been in discussion with G about the different activities he might get to do and planning all that he would need to make the week the success he so desperately wanted it to be. I met with the school to talk over the arrangements for meal-times and sleep that would need to be in place and was confident that they would do everything in their power to make it a week to remember for him and all his class-mates.

And then 2 weeks ago, M had to make what has been, without a doubt, one of the hardest decisions in his life so far. The past 4 months of food challenges have taken their toll and when that was added to the stresses of SATS, we saw an unwelcome decline in his health that we weren’t sure could be overcome easily. Despite our best efforts and hard work since mid-May, M has decided that going away to Year 6 camp is not the right thing for him to do at the moment. To say that my boy is bitterly disappointed would be an understatement. For 2 years of longing and planning to come to nothing is heartbreaking for us all and has been a bitter pill to swallow. For M, life has just seemed incredibly unfair once again.

M is frustrated that he can’t go, but he has based his decisions on the health struggles he is currently facing and knows that ultimately it is the right choice for him. He has tried to remain cheerful in school and has been an active participant in the tasks set to his class as they have researched where they’re going and what they’ll be doing. Mike and I met with his teachers and arranged for Mike to take him to the camp today for a half-day*, so that he can join in an activity of his choice and not feel that he is missing out completely. What has made it even harder to bear is that he currently doesn’t have a place on this year’s OTW Health Challenges Camp and is instead on the waiting list, with his fingers tightly crossed that a place might become unexpectedly available.

I know that in the long-run, M will pick himself up and dust himself off and keep going, just as he always does, but it’s hard to comfort him when he’s railing against just how unfair life can be because, in all honesty, right now I agree with him and it’s hard to find the positive and that silver lining we so desperately need to cling to.

*I’m delighted to share that today’s morning has turned into a full day at camp with his friends. M enjoyed the mud assault course so much that he felt confident to stay on and try his hand at abseiling and anything else he could find the time to do.