I don’t have one, whilst Mike’s the youngest of three. At the end of the day, though they might fight like cat and dog at times, the one thing I can confidently depend on being true is that, no matter what else happens, G and M always have each other’s back. They can criticise the other to their heart’s content, but woe betide anyone who thinks to express their opinion of one sibling in the other’s hearing. Even when one is trouble at home, the other can often be found defending what happened (she only did it because of something I said), offering cuddles to calm down or rushing off to find Cat (for M) or the replacement blanket (for G). Today is #NationalSiblingsDay, so I thought it only fitting to recognise the infallible bond between my 2.
- 2 houses never seen
- 5 schools never visited
- 14 job changes never discussed
- 16 school reports never read
- numerous performances never attended
- too many hospital visits, diagnoses and admissions never shared
- 2 grandchildren, 1 never met and 1 only known for 11 short months
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.
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.
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.
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
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.
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.
Every now and then you stumble across something wonderful that makes an unbelievable difference to your life or that of those around you. Since I uncovered this brand at the Free From Food Awards 2016, I’ve not hesitated to sing the praises of this particular allergy superhero from the proverbial rooftop and finding myself in the position to do this once again, I’ve not hesitated in lending my voice in support. The best thing about this particular discovery is that M’s superhero has become a firm family friend in the 18 months since our first conversation and for all the right reasons. Not only did he lovingly create sweet treats that went beyond the wildest dreams of M and G and were deliciously safe for them both, he has also sent messages of love and support, not just when M broke his leg last year, but as he prepped for his SATS this year too.
Up until a month ago, I’d never even heard of the Virgin StartUp Foodpreneur 2017 competition, but I’m now eagerly waiting for the final results with fingers and toes tightly crossed for our favourite foodpreneur: the awesome Ryan, from Borough 22 doughnuts. The competition looks to recognise and celebrate UK-based food and drink startups, with the winner being offered mentoring from industry experts as well as a 6 weeks selling opportunity through joint sponsors, intu, who own shopping centres across the UK. From the hundreds of entries received, 15 were shortlisted for the first stage of the competition, where each startup were invited to give a 3-minute presentation about their business, why they started it and the direction they’re hoping to take it in the future. From a home-delivery wine service to vegetable- and fruit-infused water and vegetarian hot dogs to hand-crafted chocolates, there’s a lot of delicious options to choose from.
I was delighted to learn this week that Ryan has moved on to the next stage and is one of 8 semi-finalists, who will receive a week’s worth of pop-up shop space at one of nationwide intu’s shopping centres to introduce their wares to a new audience. Ryan has been given a kiosk at the Lakeside shopping centre in Essex and will be working 12-hour days, 10am to 10pm, from this Friday, June 30th to July 7th. If you’re in the area and able to stop by to see Ryan, taste his amazing doughnuts and show him some support, I know you won’t be disappointed with his fantastic freefrom ware.
And don’t forget to tell him that M sent you!
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.