Tag Archives: parenting

Our Syros sojourn

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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.

 

 

Magical, mythical Athens

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One of the most wonderful things about our Greek holiday was to experience the absolute delight of both G and M as we trekked our way around Athens, visiting those ancient sites that they both associate with the fantastic Greek myths that they love to read. It’s difficult to pinpoint exactly when we introduced the children to the Greek myths, but they both love to listen to the audio-book of “Atticus the Storyteller” and M has been known to spend hours at bedtime absorbed in re-reading his favourite tales. There are just so many places to go and sights to see in Athens that we had to carefully pick out those we wanted to visit during our limited time in the city.

You just can’t visit Athens and even consider not wending your way to the top of the Acropolis to see the Parthenon and other monuments. Climbing up in 34°+ heat is not easy, but the views from the top were definitely worth the effort, and all the water we drank. Mike’s must-see destination was the Acropolis museum and whilst neither children was initially that keen to go, the lure of the air-conditioned inside, the wide array of artefacts on display and the brimming bookshelves they discovered in the shop soon overcame their reluctance. Our hostel for the duration was less than 5 minutes walk away from the museum, which made it the ideal place to head back to for a much-needed late lunch and a little downtime after our busy morning.

As well as his yearning to find a city playground to spend time in, M chose to take us to the Temple of Olympian Zeus. We visited these incredible remains in the early evening and were fortunate that there were very few other visitors to the site whilst we were there. The remaining columns were simply awe-inspiring and we were fascinated to spot the individual pieces that were so carefully used to construct each column. The ancient engineering skills that created this spectacular monument left the children speechless as we contemplated just how the Greeks managed to build it in a time before modern machinery existed.

Poor G had to wait to the end of our holiday to get to her location of choice, but it was definitely worth the wait. She would have loved to go to see the Temple of Poseidon, but the 2 hour journey there was just too much for us to squeeze into our already time-pressured holiday schedule. Instead, G decided she wanted to see the Temple of Hephaestus and it proved to be a great choice for our last day in Greece. It is found in the ancient Agora, which has so many wonderful ruins to explore as well as the impressive temple itself. The Temple of Hephaestus is the most complete temple in Athens and gives just a small insight into what it must have been like to live in the city over 2 thousand years ago.

By the time our first 3 days in Athens drew to an end, we were all ready to embark on the next part of our Greek adventures, which began with yet another early morning start, a cross-city taxi journey to the port and a passenger ferry trip to the beautiful Greek island that would be home for the next few days. 

Brave New World

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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.

Being a part of history

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August didn’t just mean the school summer holidays for our household. but also some much-needed time away from work for both Mike and me. We started our 2 week stint with a drive to London and the Queen Elizabeth Olympic Park, home to the 2017 IAAF World Championships. We’ve long enjoyed watching the athletics on TV and ever since our visit to the 2012 London Olympics and Paralympics have been waiting for the next opportunity to watch the sports live arrive. The announcement that this year’s World Championships was to be held in London caused great excitement and last August I joined the thousands of others hoping to be successful in the ballot and be offered tickets to the events of their choice. We were lucky enough to get both sessions that we had chosen, which then dictated the rest of our plans for our summer break.

Our start perhaps didn’t quite go according to plan, with packing for our trip abroad, accidents on the motorway and a necessary, but lengthy detour hampering the relaxed beginning we were hoping for. However, we got there in the end and with time enough to park our car and unload our suitcases into our Stratford hotel room before heading to the park itself. We had allowed enough time to explore Hero village, which was filled with athletic-themed activities, events, sponsor displays and the obligatory souvenir stands and I’m so glad that we had. The children had great fun competing against each other in triathlon themed challenges, trying their hand on a wheelchair obstacle course and racing the 100m sprint against Mike. It could have been so easy to have bypassed the village completely in favour of just heading into the stadium itself, but we all enjoyed the opportunity to soak up some of the Championships spirit and really immerse ourselves in all the glory of the event.

The Friday evening session was fantastic and we had the most amazing seats, which allowed us to watch the women’s long jump final with ease. The evening was filled with a great mix of field and track events including the hurdles, the hammer throw and the women’s steeplechase final, a race neither G or M knew anything about and found fascinating to watch, especially when 1 competitor forgot to go through the water jump on the second circuit of the track. However, as brilliant as that evening was, the best was yet to come and I’d be hard pressed to say who was more excited to be a part of what would become a truly historic occasion.

Since international athletics superstar, Jamaica’s Usain Bolt announced his retirement from the track following the 2017 IAAF Championships, I had been keeping my fingers tightly crossed that he would complete as part of the 4x100m relay team during the competition. Our second session was on Saturday morning and was due to include several more of the decathlon events as well as the round 1 races for all of the relay races –  men’s and women’s 4x100m and 4x400m. M in particular was incredibly excited that he might get see to his athletic hero race and the atmosphere was absolutely buzzing in the stadium that morning. It quickly become evident that we were witness to something spectacular and the whole family eagerly cheered the British teams who performed with enthusiasm and secured well-deserved places in all 4 finals. What wasn’t obvious at the time, but became sadly apparent at the finals that evening, was that we had seen not just some impressive races, but also what would turn out to be Bolt’s final track appearance as he sadly crashed out of the final with a heart-breaking injury that not only devastated him, but the watching world too. It was a great privilege to be to watch this inspirational man race and something we will all remember for a long time.

Shocking Customer Service

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At first glance, these look like great plates of food. These reflect a restaurant that has obviously understood our allergy requirements and nailed it. Right?

Actually, these represent a lunch that almost didn’t happen. An experience that certainly left a bitter taste in my mouth and almost resulted in an outright refusal to stay anywhere that could treat an allergy family so badly. I’m a keen proponent of giving praise where it’s due, especially in the world of free from eating out, but rarely will I actively name and shame those who get it so absolutely wrong. However, I am so incensed by our bad experience that I just couldn’t stay quiet this time.

We recently found ourselves in the Somerset town of Street, home to the Clarks village outlet stores and decided to head in to see if we could pick up any last minute bargains ahead of our summer holiday. Having arrived and parked our car, both children started mumbling about a need for food and we decided to start our shopping trip on a good note and have lunch. Whilst the map indicated that G’s favourite, Pizza Express, could be found on the far side of the shops, we thought we’d give a brand new eating out experience a try and opted for Frankie and Benny’s instead.

It has been a long, long time since we last ate there and, to be perfectly honest, it will be an even longer time before I choose to step foot in one of their restaurants ever again. We asked for their allergy menu, made some key choices and then waited for our waitress to arrive to start the ordering process. G was keen to have their GF pepperoni pizza and eager to exert her new-found confidence by ordering her own complicated requirements. And that’s where the problems began.

G asked to have their GF American Hot, without chillis and replacing the mozzarella with goats cheese, something we do the world over and something that has never been a problem. The waitress said that wasn’t possible and, when we explained that we needed the pizza to be both gluten- and dairy-free, she shrugged her shoulders saying that the pizza wouldn’t be dairy-free if we replaced the normal cheese with goats cheese instead. I patiently explained that G has a problem with the cows’ milk protein and can in fact tolerate goats cheese ok. The waitress walked off to “check the label” in the kitchen, before marching back to triumphantly announce that the label said it contained milk, so we couldn’t make that change.

I’ll be honest, I was slightly frustrated by now and so asked if it was possible to either see the goats cheese they use or perhaps instead, talk to the manager. I was polite in both my tone and my words, but determined that dealing with the restaurant manager would be a safer option for us and so our waitress’ response stunned me. She told me that the manager had told her it wasn’t a safe alternative and when I asked again if we could talk directly to the manager as M’s needs were considerably more complicated, she threw her hands in the air and rather rudely informed me that she was refusing to serve us because of my attitude.

In another time and place, I would have insisted on leaving right then, but I had 2 hungry children to feed and I didn’t want to start the ordering process all over again. Mike took over talking to the manager and the resulting plates of food were the success we needed them to be. We received an apology for our waitress’ attitude and reassurance that they would be very careful in preparing G and M’s lunches. They arranged a special drink for M – lemonade with vanilla- and worked hard to ensure the rest of our experience went without a hitch. I can accept that perhaps our waitress was having a bad week, my work week hadn’t been the easiest either, but for someone working in the service industry to be so dismissive and rude to a customer with additional requirements is completely unacceptable in my book. It’s a shame because both children really enjoyed their meals when they arrived, but if I never go back to Frankie and Benny’s with them, it’ll be too soon.

Charity Cut

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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

“This is my one small step, this is my walk on the moon”

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I’m not quite sure how this happened. Two years ago marked the end of G’s Junior school career and now we find ourselves at the cusp of a new adventure for us all as M’s time at the Juniors similarly draws to an end. The past 4 years have been a true roller-coaster ride and the staff at our wonderful village school have been there for every step of the journey. From the moment we stepped through their doors, they have embraced the challenges of having M in the school and provided the whole family with the support we’ve needed to get the children through all those ups and downs relatively unscathed.

In some ways, the last 6 months have been the toughest of his school career, even more so than the NG-tube and broken leg we’ve dealt with in that time. He wasn’t able to attend his Year 6 camp because of poor health, but he found the joy in spending the day there getting muddy with his friends instead. We survived the stresses of SATS and celebrated in style last weekend when we found out just how well he did in passing them all. We’ve enjoyed the Year 6 production of The Wizard of Oz and are finally winding down to the Leavers’ Service at the end of the week.

This comment in his end of year report from his class teacher reflects the wonderful young man he is growing up to be:

“He is an inspiration to his peers that in spite of his health issues, he participates fully in everything and does not use his illness as an excuse not to try….Thank you M, for being such a valuable member of the class this year. You contribute more than perhaps you realise!”

As we wave goodbye to the end of an incredible era, there will be more than one tear shed along the way, but we are preparing to embark on the next big adventure, building on the incredible foundation that has been put in place with great care, love and consideration over the last few years:

Carnival Magic

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Never being one to let something get in my way, I’ve tried to instill that same determination to succeed in both G and M. This time last year was the perfect example of this, when M took part in our local carnival parade, albeit in his wheelchair, and G stretched her self-confidence to become one of the dance captains leading their Stagecoach school as they danced their way along the carnival route. Kitted out in their 70s-inspired costumes, with the likes of Tragedy, Night Fever and Disco Inferno blaring out to get not just the kids, but all the spectators dancing too, they definitely captured an essence of Rio de Janeiro on the day.

This year we were back again, though our carnival offering really couldn’t have been more different to the party atmosphere of 2016. G and M were both keen to be a part of our church’s carnival float and relished the opportunity to choose the characters they wanted to portray from that classic fairy tale, Beauty and the Beast. With her long dark hair, G was perfectly suited to playing the part of “Belle” and suited the yellow costume I managed to pull together in the 10 days leading up to the event itself. M in the meantime, conspired with his best friend at church and agreed that he would play “Lumière“, whilst C would be “Cogsworth“. M’s final outfit certainly did the job, though the glorious June sunshine made for one very hot and slightly grumpy child once the parade was over. The carnival float itself looked amazing and the children loved being able to sing along, dance and wave to everyone as it carried them down the street. I love being part of such a fantastic local tradition and can’t wait to see what next year brings for yet another repeat performance.

Perfect Faces for Radio

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Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

Bitter disappointment

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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.