Tag Archives: holidays

City Adventures in Lisbon

The first few days of our Portuguese adventures were spent in the capital city, Lisbon, where we enjoyed some great days out in what was a first visit for us, even though we know parts of the Algarve extremely well. For anyone wondering where to go on a family break, Lisbon has a huge variety of choices to suit just about every age and I wouldn’t hesitate to recommend it. We weren’t staying in Old Lisbon itself, but rather in one of its suburbs and it was extremely easy to travel in and out of the main centre by train using their Via Viagem travel card system, something akin to London’s Oyster cards.

My Mum had lent me her Lisbon guide-book before we went, which I had just about had time to skim through and highlight some things which I thought might appeal to us all, given our ages ranged from 10 to somewhere in the 60s, and I knew she had a list of ‘must-sees’ to hand too. Her Berlitz Pocket Guide also proved to be a welcome distraction for an unexpectedly nervous M, who was surprisingly anxious about our 2 hour flight as he hasn’t flown since before having his tube and spent the time studying the guide pinpointing attractions he really wanted to visit whilst we were there. IMG_0957[1] With a list as long as our arm to work our way through, we narrowed down our choices to the top few that appealed the most to us all and set off to see just how much ground we could cover in our 3 full days in the city.

Our main choice for the first day was to jump on to a “Hop-on, hop-off” bus, a firm favourite in our family as a way of exploring a new place as it not only helps orientate ourselves, but also serves as a great way of seeing some sights that we might otherwise not get to visit due to time constraints. We used the familiar City Sightseeing tours as a company we’ve used around the world with great success, but have to say that this time we were left a little disappointed. The bus-stops were poorly signed and we frequently found ourselves walking miles in an attempt to work out exactly where we needed to be to catch the bus back to wherever we next wanted to be. On one occasion, we even gave up completely having spied the bus heading away from us after a good 20 minutes standing in the blazing sun at a marked bus-stop on what we knew had to be the wrong side of the road for the direction we wanted and instead negotiated a great rate with one of the Tuk Tuk drivers, much to the children’s delight.

We took the bus and travelled out to the area of Belém, where M had identified the impressive Torre de Belém as a necessary sightseeing stop. He was particularly intrigued by the stone rhino that graces the base of one of the Tower’s turrets and insisted we explored until we found it whilst the older members of our group held a place in the queue. We waited for well over an hour in the soaring heat and it was just about worth the wait. IMG_0914[1] Both children enjoyed exploring the different levels of the Tower, honing their photography skills amongst the cannons in the artillery as well as in the dungeons and of the stunning panoramic views of the River Tagus from the top. The tower is climbed via a steep spiral staircase and a series of sequenced traffic lights indicated when it was time to climb up, down, or pause for breath in one of the rooms off the main staircase.

Having exhausted all that the Torre de Belém had to offer, my Mum was keen for us to head towards the infamous Padrão dos Descobrimentos, perhaps one of the most well-known sights in Lisbon. Sadly, the monument that depicts a number of important Portuguese historical figures including explorers Magellan and Vasco da Gama, was hidden by scaffolding, but we enjoyed the walk along the river before wearily trekking on to our ever-elusive next bus-stop. Our travels also took us past the impressive Cristo Rei statue – M’s “…like Christ the Redeemer, but not..” – the beautiful Moorish-inspired Campo Pequeno Bullring and the awe-inspiring Águas Livres Aqueduct, all of which give us great reason to visit this beautiful city again.

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What we’ve learned from Rio 2016

Summer Bakes

Best. Week. Ever.

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Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1] he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1] And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I had been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1] As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me. M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.

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Lost in Translation

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As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? Our back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

Wanted: One Job

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When this week started, I was expecting the usual end of term mayhem for both children as we gradually wound down towards the summer holidays and close to 6 weeks off school. The holiday child entertainment plans were falling into place with activity weeks, Over The Wall, pony camp and drama school booked to keep them occupied whilst Mike and I put in our hours at work. I had been in touch with Easyjet about our flights to and from Portugal and was well into the process of making sure we can take with us everything we might conceivably need to feed both M and G whilst on our holiday.

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What I didn’t expect was to be looking for a new job.

This week has disappeared into a wild roller-coaster of raging emotions, sleepless nights and a flurry of internet searches, e-mails and phone-calls to recruitment agents, accountancy friends and old contacts to see what leads they might have for me to follow; and I’ve not been able to slow it down enough to get off the ride. When I was told on Monday that I was being made redundant with immediate effect, I was shell-shocked to say the least. Left numb and reeling by the impact this news would have on our summer, but, as the week has progressed, my emotions have broken through the surface and have vacillated between barely veiled anger at my ex-employers, a sense of depression that threatened to overcome everything else and complete disbelief that it wasn’t just a dream.

My post as a senior accountant has disappeared due to a massive change in the personal circumstances of my most recent employers, something we were only told about a month ago. At the time my concerns were whether this change would impact on our work, but was told that nothing would happen for another 6-8 months as they worked out what to do with the business and the client base. I am angry that little more than 3 weeks on from that conversation, I’ve had to deal with the further fall-out and the unwelcome revelation of redundancy without any real warning. I’ll be honest, I had started a little tentative searching to see what was out there as the atmosphere in our office had become tense and untenable, but I truly believed that I had a little more time on my side, time that would allow me to make the decision to move on once again and find the right post for me and the family.

Drawing on the strength that has defined me as an EGID Mum, I’ve got up every morning to get the kids washed, dressed and to school on time, even though all I’ve wanted to do is stay hidden beneath my duvet and avoid the real world. I’ve spent hours in front of my computer screen every day, fine-tuning my CV, searching for available practice and industry roles in the surrounding area and retyping my information time after time after time to complete applications and establish an on-line presence in the recruitment world; before finishing the days too worn out to do anything more than watch mindless TV before collapsing into bed. I’ve taken endless phone-calls from eager recruiters, who are desperate to place an individual with my skill set and have learned to be firm about the type of role I’m looking for and where I’m willing to compromise on my requirements.

Mike and I have taken the decision to keep the news from both M and G at the moment as they need to be able to enjoy their summer without the worry of Mummy being out of work overshadowing their holiday fun. I’ve smiled and chatted and engaged in the classroom and at the school gates, celebrating the end of year excitement alongside the children. I’ve taken M to his first physio session and watched with joy as he finally starts to regain his confidence and is working to rebuild the strength and mobility of his leg, and I’ve joined in and encouraged their plans for their adventures over the next few weeks.

I’m working hard at staying positive. I know that my accountancy skills will stand me in good stead and the fact that I already have 2 interviews set up for next week, with a possible 3rd in the works too, shows me that hopefully I won’t be without work for too long. But, my biggest decision has to be about the direction I follow next with my career. I can, in all likelihood, pick up another part-time job in an accountancy practice without too much trouble, which would be the easy thing to do, but this could be an unexpected chance to make a change. I don’t love working in practice. I’ve been happiest working in industry and that’s what I ideally want to go back to. I want to use not just my accountancy background, but the business acumen I’ve picked up along the way. I am re-assessing the type of company I work for, knowing that the last couple of years have seen a real passion growing for charity work as well as my blog and the allergy world. I have loved all of the opportunities that have opened up with events like the Free From Food Awards and the Allergy Show, and the amazing friendships that have grown through those events. I have an idea for something that I’m sure would be a success if I could just work out how to get it into production, but I need a steady income to allow me to investigate whether it is a real business possibility or not.

At the end of the day, I’m an out-of-work accountant, a dedicated Mum and an enthusiastic blogger and I just want a job that allows me to put that all together in one winning combination.

A European approach to Allergy-friendly food

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IMG_0515[1] Given our Italian break was courtesy of a competition win through the Allergy and Free From Show and Dr Schär, it didn’t come as any surprise that there were several gluten-free items available at the amazing Vigilius Mountain Resort. However, what we didn’t expect were the allergy-friendly offerings we discovered from the minute we arrived at Munich airport and these were the things that possibly impressed us the most. Mike and I had a 2-hour wait in Munich before the shuttle-bus arrived to take us to the hotel. It wasn’t really long enough to venture into the town itself, but gave us more than enough time to explore the airport and its shops. I was particularly keen to see if I could spot any of the German delicacies featured on the Munich episode of Paul Hollywood’s City Bakes and was delighted to be able to snap a quick photo of freshly made pretzels to show M when we got home.

IMG_0516[1] Having exhausted most of the shopping opportunities available to us, we decided to take a quick whiz around the small supermarket before heading off to meet the bus. You can only imagine my surprise and absolute delight when we stumbled upon this fixture filled with dairy-free alternatives, including the all-important rice milk that is now a staple in our household. There was a slightly smaller unit with an array of gluten-free products too and browsing the store’s shelves and fridges, I was able to pick out with relative ease other allergy-friendly foods. I think what impressed me the most was this was a small supermarket at the airport. Not some major out-of-town hypermarket, but somewhere where travellers would stop to pick up a few essentials before heading on to their final destination. Obviously I can’t comment on what would be found in larger stores around Germany, but this bodes well for what I can only imagine you might be able to buy. We have had mixed success in finding safe foods for both M and G whilst on our holidays in the past and this summer will be travelling back to Portugal for the first time since M’s diet became so restricted. I can only hope we find as good a selection as we stumbled across in Munich.

T IMG_0552[1] he Vigilius resort is owned by Ulrich Ladurner, who is also the founder and president of the Dr Schär group and so it comes as no surprise that every meal has gluten-free options available if wanted. Breakfasts consist of an amazing buffet containing just about everything you could conceivably want – cereals, pastries, fresh fruit, cold meats, fruit juices, smoothies, cooked breakfasts and cheeses. There was a separate section for the gluten-free choices and I was pleased to see that soya milk, local goats milk and cheese and dairy-free chocolate sauce were available too. Our evening meals at the resort were delicious and despite our initial plans to visit Lana for dinner on a couple of evenings, Mike and I ended up choosing to stay in the hotel and eat in their restaurants. There are 2 restaurants at Vigilius: the delightful Stube Ida serving regional dishes and wine, and the more formal Restaurant 1500 with exquisite and interesting menu choices. The menus were clearly annotated to show which dishes could be made gluten-free and gluten-free bread was also available on request. We enjoyed every meal we had there, and whilst we didn’t choose to eat the “Variation of Carrots” for our main course – Tartar of carrots, carrot-ginger cream, crunchy carrot peel and carrot spaghetti with curry and carrot gel – , IMG_0539[1] the “Herbs of the neighbour” dessert – Herb cookies, herb chocolate ganache, hay Chantilly, camomile Panna cotta and lavender ice cream – was phenomenal, even if the occasional thought did flash through my mind that it was a little like eating a bowl of pot pourri! We chose to drink regional wines with our dinners, grateful to receive recommendations from the serving staff, who introduced us to some that have quickly become new favourites.

IMG_0637[1] In comparison, our lunchtimes were spent at various of the many gasthauses in the mountains surrounding the resort, where we chose meals that were equally delicious, but much simpler dishes than those we enjoyed for dinner. We frequently opted to share platters of local products, such as fennel bread, speck, goats cheeses and other cooked meats and of course, washed these down with a glass of local beer. Friends have told me that eating gluten-free in Italy is relatively easy and our experiences would suggest that to be true as we found a gluten-free section to a surprisingly extensive menu in a small, remote gasthaus at the top of Monte San Vigilio. I have to confess that we didn’t put these allergy-friendly options to the test as we relished the opportunity to eat “normally” without M and G around, but Italy has definitely become a potential destination for us in the future.

IMG_0557[1] Our final foodie surprise was on our way back to Munich, at what was advertised as the “last service station before Austria.” The journey to the resort on the Monday had been non-stop, no toilet breaks or opportunity to stretch our legs even once during the 4 hour trip. However, thanks to the driver of our return journey, who evidently considered himself to be the Michael Schumacher of the public transport world, we somehow managed to save time and were allowed to stop for 20 minutes near lunch-time. As we wandered around the service station looking for something quick and easy to eat before we climbed back on board, I also kept my eyes open for any last-minute goodies I could pick up as small presents for M and G from our holiday. Amongst the bumper-sized packs of pasta, bottles of olive oil and chocolate bars, I also spotted boxes of gluten-free rice flour cookies sitting in plain sight alongside their non allergy-friendly counterparts, something I’ve never seen in a service station in this country. Our holiday was a real eye-opener when it comes to how this part of Europe tackles the matter of allergy-friendly foods and has made us more confident to spread our wings and travel there with the children when time allows.

Vigilius Mountain Resort

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IMG_0685[1] Our retreat for those four days away was the beautiful Vigilius resort, 1,200 metres up the Monte San Vigilio in the Italian Alps and only accessible by a 7 minute cable car ride. Mike and I had arrived in Lana, the small South Tyrolean town at the base of the mountain, at around 5pm and headed immediately to the cable car station, where we waited patiently for it to be fixed before we headed up to the hotel. It had been an early start and a long day of travelling, but as we stepped out into the idyllic atmosphere of this peaceful location, all the stresses and strains gently started to slip away. IMG_0595[1] We were met at the cable car station by one of the hotel staff, who offered to give us a brief tour of all the facilities before booking us a table at one of the restaurants and settling us into our room for the evening.

This is an ecologically friendly and sustainable resort, where neutral colours and careful simplicity create a peaceful retreat from the hustle and bustle of everyday life. The rooms are spacious and open, with stunning views of the mountains – the Dolomites and the Alps – on every side. It took a little getting used to the open plan nature of our room, where the bathroom area and bedroom were separated only by a strategically placed small clay wall that gives a slight nod to a sense of privacy. IMG_0524[1] Every room includes a stereo system, but no televisions, though they and DVD players can be provided on request and whilst wi-fi is provided free of charge, it is switched off by 11pm every night creating the opportunity to be as technology-free as you want during your stay. The facilities include 2 restaurants, a library, inside and outside seating areas as well as eternity pool, whirlpool and spa. It really is a place designed for relaxation and indulgence in equal measure.

Our days were wonderfully lazy as long and late breakfasts were followed by time spent alongside the pool or exploring the local area. On 2 separate days we took the single chair lift up to the top of the mountain and followed the well-marked trails to discover astounding panoramic vistas, remote churches and wonderful gasthauses where we enjoyed simple lunches of the local specialities – speck, cheese, fennel bread – and the occasional glass of beer. We also took the cable car back down to Lana, where we spent some time searching for postcards and goodies for M and G as well traipsing between some of the 40 churches and monasteries to be found in this vibrant Italian market town. IMG_0678[1] This area is bilingual with all signs and menus written in both Italian and German – that 8-week Italian course in the 6th form finally came in handy – and we found most of the people keen to practise whatever English they could.

The resort itself offers a range of activities to its guests, including hiking, mountain biking and other fitness programs, though Mike and I only watched an archery session from afar. We did, however, spend a lot of our time in the pool, sauna, steam room and spa, enjoying the peace and quiet of the mobile-free area as we swam in the eternity pool and relaxed in the indoor and outdoor whirlpools. Thanks to my Mum, I was also able to pamper myself one afternoon with a peel, wrap and full body massage. Two hours later, I rejoined Mike poolside before we headed back to our room to prepare for our complimentary evening aperitif before a late dinner in one of the fantastic restaurants.

Without a doubt, Mike and I enjoyed a fabulous time at the Vigilius Mountain Resort and left feeling more relaxed and rested than we have in a long time. The hotel staff were friendly, polite and helpful and made our stay a wonderful experience. It was a great opportunity to spend time together, without the pressure of having to cope with the everyday juggling act that is the constant needs of the children, work and home. We wouldn’t hesitate to go back to Vigilius again should the opportunity arise and I would love to explore more of the surrounding towns of the South Tyrol.

*Disclaimer – Our 4-day stay at the Vigilius Mountain Resort was courtesy of a competition prize won at the Allergy & Free From Show Liverpool and sponsored by Dr Schar UK. The views expressed in this review are entirely my own and those of Mike.

The Italian Job

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Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up.

The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

“Barry Broken Bones”*

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It’s currently 5.10am and I’ve been sitting awake on the surgical ward of our local hospital since M woke in extreme pain at around 3.15am. He has finally dropped back to sleep, but it looks like I’m going to be surviving the next 24 hours on just 3 hours of unsettled sleep. The last 24 hours have passed in a blur and certainly our day didn’t end as it started out. big-play-barn We’re halfway through the Easter school holidays and, with my Mum on her travels once again and me committed to work, Mike has taken some time off from his job to be on childcare duties for the duration.

The plan for the day was a popular one with M and G alike – drop me off to my office, back home for a quick breakfast, packed lunch prep and bag pack, and then head off to a nearby play place and farm – one of M’s all-time favourite places to visit when time allows. Day out done, it would be home for a spot of homework and maybe some TV before the return journey at the end of my work day to bring me home just in time for dinner. Timed to perfection, it promised to be a fun, busy and productive day for all concerned. The first I was aware that something untoward had cropped up was the phone-call to my office during lunch-time. A phone-call from G. The type of phone-call no parent wants to receive out of the blue:

“Hi Mum, it’s me. Dad just wanted me to call and let you know we’re having to take M to hospital…”

Cue vivid flashbacks to a sunny day in Cornwall when M was 4 and the sounds of G pounding on the car window whilst Mike carried a screaming M in his arms and the ensuing drive in something of a blind panic to the nurse-led unit at Bodmin before an ambulance trip for 2 to Truro.

The partial facts I was able to extract from her at that point told me only a fraction of what I wanted to know, but it was enough to cause my heart to lodge itself in my throat and remain there for the rest of the day. With the news that M’s leg had been hurt and needed to be checked in A&E, the remnants of my lunch were pushed to one side and I worked hard to suppress the anxiety that I could feel creeping up in an attempt to catch me unaware all too frequently. I spent the rest of my afternoon in a state of mild shock, feeling nauseous about what might have happened and watching the minute hand tick slowly by as the tension started to build. It didn’t help that neither my office or our local hospital has great mobile phone signal meaning that it was near impossible for Mike and I to communicate in any effective fashion. I did manage to somehow stay focused enough to complete my day and finish some work during those long waiting hours, though the quality, accuracy and sense of that work will only be revealed once I’m back there. After what felt like hours, I finally gave in to my anxieties and called A&E, where, by complete chance, I managed to catch Mike just as he was about to leave with the children. Despite M’s severe pain, the nurse assessor felt confident that the lack of swelling and no discernible sign of a break on thorough examination indicated it was just badly bruised and some judicial doses of painkillers would soon see him back on his feet.

Now, the fact that I’m currently writing this by the light of my phone on a noisy hospital ward will probably tell you all you need to know and that the story didn’t end there. Not even close. By the time, I had been rescued from my office and we reached home, M was unable to put any weight on his foot and was screaming from the excruciating pain. He was rating his pain levels at approaching a 10 out of 10, which we knew meant this was far more serious than originally thought and his pale, strained face reflected that fact. IMG_0301[1] With very little debate and a hurried phone-call to A&E, we were soon back in the car and heading to the hospital, this time determined not to leave without an x-ray. The nurse assessor admitted on the phone to Mike that she had been reflecting on M and regretting discharging him without an x-ray, so for once we were happy to be visiting our local A&E again.

Within the hour, and obvious from the very first x-ray, we had our answer: M has a nasty spiral fracture to his left tibia. That has led to a full length leg cast from mid-thigh to toe, a considerable amount of tramadol, paracetamol and ibuprofen and an overnight stay for 2 on the surgical ward for observation. It’s been a difficult night as once again G has been sidelined whilst M heads into hospital, though this time the proximity to home has made it so much easier and she has been a superstar throughout. M’s pain has reached new levels of awful, though even then, as he lay sobbing in his hospital bed, he wouldn’t rate it as more than a 9, or possibly a 10, proving once again how accustomed to chronic pain he has become.

IMG_0302[1] The next few weeks are going to be tough and not just because of his broken leg. M is going to have to find a fortitude he’s never had before as he misses out on a much longed-for dream because of it. He is extremely disappointed, but courageously trying to take it in his stride, with the smile on his face we all know and love. I can see the hurt deep in his eyes, but we will hope that something even better comes from this disaster. What saddens me even more is that he really has been the victim in this situation. His broken leg is not due to careless or reckless behaviour on his part, but down to the action of another child. A child who probably has no idea of the physical damage to M’s body, let alone the other far-reaching consequences of his violence towards my child. I’m still reeling from the shock that a child of a similar age could cause such injury; disturbed that a family could leave without checking on his well-being and left hoping that my children don’t lose their beautiful skill of making friends of strangers wherever they are, even though the consequences can unbelievably be so devastating. I fear that this incident will leave an emotional scar on them both that will take a long time to heal.

*M’s leg might be broken, his dream in tatters and his confidence knocked, but at least 1 thing is still in tact – his sense of humour. In the wee small hours, whilst floating on a cloud of entonox, M decided that this needed to be his new name! That and he’s keen to investigate the price of a cow…

7 years to diagnosis

Searching for an answer