Tag Archives: EGID

Γεια σαυ Αθήνα

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

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

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

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

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

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The holiday starts here

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

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

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

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

Brave New World

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

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

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

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

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

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

Charity Cut

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

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

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

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

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

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

Bitter disappointment

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

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

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

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

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

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

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

Pub dinners and Picnic lunches

Our 2 days in Stratford-upon-Avon meant that we had to find somewhere safe to feed both G and M for all our meals and we took the opportunity to try out some new options that we hadn’t had time to explore before. As far as breakfast is concerned, these days we tend to go for the easy option, which involves taking M-friendly cereal, a couple of litres of rice milk and a pot full of raisins for a cosy breakfast in our room. The tempting array of breakfast treats, from bacon and eggs to toast and jam, is just too much for M to cope with first thing in the morning and we know that having to deal with that temptation will cause an anxiety that will last the rest of the day. Daytime snacks are also easily covered as we take a supply of rice cakes, home-baked goodies and fresh fruit for M and a selection from perennial favourite Nakd date bars, sesame snaps, fruit snacks and gluten- and dairy-free treats for G.

However, when it comes to lunch and dinner, especially if we haven’t timed our trip perfectly to allow for a packed lunch or tea to cover one of our meals, we are left to search through the shelves of local supermarkets or scour the menus of available restaurants with our fingers crossed that we’ll find something that will suit us all and keep the children full and happy. Our first night’s dinner was a resounding success and we were left wondering whether the rest of our meals would be so adequately met.

At last year’s Free From Eating Out Awards, pub chain Wetherspoons won a Silver award in the Pub restaurants category, with their impressive gluten-free, dairy-free and vegetarian/vegan offerings. I’ll be honest, Wetherspoons is not somewhere we would usually choose to eat when there are so many other world cuisines to taste, but The Golden Bee in Stratford looked welcoming and promised to be another success story when it comes to feeding M. I will confess to breaking from our norm as we checked with the restaurant beforehand to see if they could cook an M-friendly meal and then made a reservation to make sure there would be a table waiting for us and our peculiar dietary needs. As is so often the case, there was no rice option available for M, but 2 grilled chicken breasts, plenty of cucumber and 2 packets of pre-cut apple slices proved to be all our hungry boy needed for his dinner. G struggled a little to decide on what she wanted to eat, not least because she had to cross-reference between the extensive gluten- and dairy-free menus, but she finally settled on gammon and egg, which is a definite favourite of hers. I was impressed by the range of foods available and whilst they weren’t able to provide safe alternatives for dessert, the plates themselves were more than enough to feed and satisfy my hungry duo.

Our next challenge came with our picnic lunch the next day, but I thought I had another potential ace up my sleeve and was delighted to discover that I couldn’t have been more right. Thanks to friends from the wonderfully active on-line allergy community, I had heard more than once about the improved selection of freefrom foods available at Marks and Spencer and it was great to finally have a chance to test it out. The selection of “Made Without” sandwiches and wraps available for G was impressive and, in the Stratford store, incredibly easy to find, though a trip to our local M&S this week has proved a lot more challenging as they hide their allergy offerings in plain sight amongst all of the other sandwiches for sale. It didn’t take G long to zoom in on her sandwich of choice and the gluten-free prawn mayonnaise sandwich was definitely massively enjoyed. She also chose some plain crisps and was keen to try the gluten-free scotch eggs that we had spotted in the chiller cabinet. She later confessed that she hadn’t enjoyed them as much as she hoped she would because of the flavour of the sausage meat, but it was just so nice to be able to buy her some picnic foods that were just like those others would eat. We managed to find some safe cooked chicken slices for M and accompanied by rice cakes, pink lady apples and pears, we had a great picnic to keep the whole family happy.

All in all our weekend stay in Stratford-upon-Avon was a great success and both children want to visit again soon and perhaps see a Shakespeare play in the theatre.

Stunning Stratford-upon-Avon

We may have had less than 48 hours to explore and enjoy all that Stratford-upon-Avon has to offer, but we certainly gave it our best effort. We had been hoping to introduce the children to their first Shakespeare play, but felt that “Anthony and Cleopatra” was perhaps not the ideal starting point, even for our theatre-loving duo. Instead, we settled for a backstage tour of both the Royal Shakespeare Theatre and the Swan Theatre, a climb up the Tower for some spectacular panoramic views and a visit to their fantastic interactive exhibit, “The Play’s the Thing“. I would be hard-pressed to say which particular tour was the favourite, but I think that for G and M, the hands-on activities and the costumes and props in “The Play’s the Thing” just edged out the lessons learned about fake blood, lighting and the other backstage secrets that keep these theatres running.

Our Sunday was gloriously sunny and M in particular was desperate to spend some time on the river. After our successful Saturday night dinner at Zizzis, we had meandered our way through Stratford and along the riverbank, where the children spotted some boats that they were keen to hire the following day. Our luck was in and we spent a fun, though occasionally slightly stress-filled 40 minutes exploring some of the river itself. G and M both took their turn to row the boat and thanks to some cunningly strategic seat choices, Mike ended up soaked through, whilst I remained comparatively dry. It hadn’t been a part of our original plans, but was a lovely way to spend an hour giggling with the family.

Our Sunday had been glorious, but sadly Bank holiday Monday itself turned into a fairly wet and miserable day. We had decided to spend Monday looking around the various Shakespeare properties and started at The Shakespeare Centre on Henley Street. Situated next door to Shakespeare’s Birthplace, the Centre had some great exhibits exploring not just the life and works of Shakespeare himself, but the time in which he lived. G was drawn to the lengthy list of his plays and took great pleasure in mentally ticking off those she has read, although I hasten to add she’s been enjoying abridged versions, rather than the original plays themselves. She has been studying “Much Ado about Nothing” at school and was keen to not only share her knowledge of the storyline, but also to invest in her own copy of the play to read at home. She made the sensible decision to buy a version that explained the nuances of the text alongside the word themselves and couldn’t wait to get started on reading it.

M was less entertained by all we could see, though his attention was grabbed briefly by the small group of actors performing extracts from various Shakespeare plays in the grounds of his birthplace. Having gleaned all the information we possibly could handle, the children spent some time browsing potential pocket-money purchases in the shop before we headed off for our next destination. We managed to pick up a semblance of a picnic lunch, which we enjoyed riverside, sheltering under the trees from the somewhat persistent rain and then walked on to Halls Croft, a property that none of us had ever been to before. The top floor of the house contained displays of various pieces of historical medical equipment, which both children found fascinating and they also took part in the mouse treasure hunt, albeit really for a younger age group. The gardens were glorious, but the weather just a bit too wet to really enjoy and so we beat a hasty retreat and trudged our way back to our hotel and car to start our homeward journey.

G was keen to make one last stop before we set off towards home. although M pointblank refused to leave the warm and dry environment of the car once he had settled into it. So instead, G and I made our way into Anne Hathaway’s cottage, where she listened intently to the short talks we were given about what we would be seeing and the history of the Hathaway family. Unfortunately, being the end of a grey, wet and fairly miserable day, there was not much natural light coming through the windows and the low-level internal lighting, in keeping with the age of the cottage, made it incredibly difficult to see, even for my eagle-eyed daughter. Cottage toured, we made a quick exit via the unavoidable gift shop and met up with Mike and M to start the journey home. All in all we had a great weekend in Stratford and are hoping to make a return visit in sunnier times to see all those bits we had to miss out this time round.

Wonderful dinner, shame about the price

After a busier-than-originally-expected National Eosinophil Awareness Week, I took a much-needed sabbatical from my blog and concentrated my efforts on getting my day job and home life back in order to varying levels of success depending on which particular task you’ve decided to look at. With May half-term now behind us, it seemed an opportune moment to get back to the writing and catch up a little with our adventures over the last few weeks. Whilst there are lots of things to tell you about, I decided to start with one of my favourite things to share – the success story of a fantastic meal out.

Our household has been filled for months with the unbelievable stress of M’s SATS and by the time half-term hit, that particular challenge had been well and truly put behind us. Thanks to the unfailing support of M’s class teacher and school, we all came through the experience relatively unscathed and Mike and I wanted to do something to mark the end of that pressure and instead look forward to the rest of M’s final term in Junior school. The first weekend of half-term was the May bank holiday and we decided to surprise the children with a trip to Stratford-upon-Avon to discover more about this beautiful Warwickshire town and its most famous forefather, William Shakespeare. We had lots planned for our 2 days there and the glorious May sunshine on the Sunday made for a fantastic day. However, as always, our skills in finding somewhere safe for the whole family to eat were stretched to the limits, though our final destination on the Saturday evening proved to be a great choice.

For those of you who have never been to Stratford-upon-Avon, it is not filled with a plethora of the chain restaurants we have somewhat come to rely on as a “safe bet” when we need to feed M somewhere new and sadly the few small independent eateries we explored were unable to prepare anything that he could eat. Finally, I spotted a Zizzi restaurant and whilst we haven’t eaten there for a long time, I had in the back of my mind a vague memory of a discussion within our EGID support group, where others had had great success with eating there. We headed inside and started questioning the manager about whether there was any chance of an M-friendly dinner or not. To our delight, he reassured us that they could manage a plain grilled chicken breast with cucumber and were happy for M to eat his own rice cakes at the table.

As G, Mike and I perused the menus to make our own dinner choices, I had a sudden flash of inspiration about something I was sure I had read and, upon checking once again with our extremely accommodating manager, was delighted to be able to tell M that he could also have some mozzarisella cheese added to the dish to add a little something extra that he hasn’t been able to have when eating out before. M couldn’t wait for his dinner to arrive and G was similarly excited about her pepperoni pizza. The plates looked fantastic when they finally reached our table and both children soon made quick work of clearing the dishes without any argument. Mike and I also enjoyed our meals and we would have been more than happy to call it a night there, but it turned out that the best bit was yet to come.

Whilst G had been studying the extensive allergy menu, she had identified a couple of gluten- and dairy-free puddings that she could have and my eagle eyes had already spotted the rare possibility of lemon sorbet as a dessert for M. Our waitress was happy to grab the lemon sorbet label for me to check and as soon as I gave the go-ahead, a double scoop of sorbet and a fantastic-looking Sticky Chocolate and Praline Torte with coconut and chocolate ice-cream arrived at our table for G and M. For the last couple of years or so, there has been a campaign called #fruitisnotapudding, which seeks to encourage allergy-friendly options for dessert, rather than the somewhat ubiquitous fresh fruit salad. Over the last few months, this campaign has really flourished on social media and it’s been great to see what restaurants can do when they really think about it. As a family we rarely eat pudding whilst we’re out because there is only very occasionally some tempting and tasty options that are both gluten- and dairy-free for G, without even beginning to think about preparing a safe alternative for M. Our discovery of this delicious Torte and ice-cream  for G was, for her, a dream come true and only goes to show that it absolutely can be done with some effort.

It won’t surprise you to learn that the dessert dishes were emptied just as quickly as their main course plates had been and we had 2 very happy children by the end of the meal. We thought nothing could spoil a great evening meal out for us all…until the bill arrived at our table. There is no rhyme or reason to how any restaurant charges us for the meal that they prepare for M; sometimes we have a double portion for the price of one, sometimes they just bill us for an extra or a side dish and very occasionally we have been fortunate to be gifted M’s meal for free. As is so often the case, M asked for a double portion of chicken and the plate of 2 grilled chicken breasts topped with some melted mozzarisella cheese and a healthy serving of cucumber was added to the bill at an eye-watering £27.90! Unfortunately, Zizzi’s approach to billing left us with a slightly bitter aftertaste and even though the duty manager did eventually concede to just charge us half of the original cost, we will have to think very carefully about when and if we choose to visit them again. It was a fantastic meal out for us all, but we ended up paying a lot for less than a handful of ingredients.

M’s marks:             10/10                                                                                                                               G’s  marks:             9.5/10                                                                                                                               Parents’ marks:    9/10 for food, but a disappointing 2/10 for approach to billing

NEAW 2017 – The journey continues

NEAW 2017 is drawing to a close, but for those of us living with EGID the journey doesn’t stop here. Everyday will continue to involve taking a number of medicines, examining food labels, careful food preparation, monitoring symptoms and hoping that the next day will be even better. Small hiccups might become major hurdles to leap, or may pass by almost unnoticed as we breathe a sigh of relief that they didn’t become something more. Parents will continue to find last-minute solutions to unexpected activities at school, plan trips out with military precision and pull together paperwork, photos and lists of symptoms to take to the next hospital appointment. We will comfort our children whatever their battle, be their most ardent cheerleaders and be prepared to tackle anything and everything to get them the very best healthcare and support. Despite the increasing uncertainty about the EGID diagnosis, we will continue to raise awareness and, more importantly, we will never stop believing in our children.

This is the short film G and M made 2 years ago to explain EGID to their classmates. Whilst M does not have his feeding tube any more, the message is as clear now as it was then and I wanted to share it again:

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW2017 – Resilience

Resilience: the ability to become strong, healthy or successful again after something bad happens.

What an amazing quality to possess and one that we’d all to like to develop, especially when times are tougher than we ever imagined they could be. Without a shadow of doubt, the EGID diagnosis has forced us all – and by us, I don’t just mean our family, but all those families living with EGID – to become incredibly resilient, even when we’re dealing with bad situations that have nothing to do with this illness itself. During last year’s NEAW, I wrote about being an EGID Mum and the heartbreak that I had been struggling with because of M’s broken leg and the lost opportunities that resulted from it. This year, the current uncertainty surrounding the validity of the EGID label has once again pushed Mike and me to our limits as we grapple with the challenge of managing the health of our child, physical and mental, whilst also dealing with the unavoidable “elephant in the room” of that unanswerable question mark about his diagnosis whenever we attend gastro appointments that seem to try and avoid using EGID as a valid reason for his current struggles. We are not the only parents who find themselves in this position as conversations amongst our EGID friends and extended family show.

Life has taught me to be resilient, to be a strong woman who’s not afraid to face up to whatever is thrown at me, even if sometimes I need to pause and take breath before I can fully deal with it all. It sometimes feels as if I’ve been put through more than most: my T1D diagnosis on my 9th birthday, losing my Dad before he had a chance to get to know my children and the threat of further sight loss last Christmas; and yet somehow I’ve managed to find my way through it all. As a family we’ve certainly had more than our fair share of chronic illnesses to contend with – T1D, EGID, Cancer, Parkinson’s, MS, Alzheimer’s disease to name a few – but they’ve taught us all one thing: that we can survive. In fact we can do more than survive, we can still have positive, purposeful lives and can definitely live and enjoy life to the full.

As a Mum, I’m proud to see the resilience that my children are building themselves, even though it is heartbreaking to realise the reasons they’ve needed to develop this character trait so early on. But their unquestionable resilience to life’s challenges, doesn’t mean that they are immune to the insensitive, hurtful and thoughtless comments of others as became patently obvious this week. M is going through a tough patch right now and we don’t really know why. We expected the anxiety of his SATS last week to affect his gastro health and returned to his simple 6-food diet to try to reduce the stresses on his body. This week has seen a real relapse in many of his symptoms and we’re struggling to see the light at the end of this immediate tunnel. I know, in that way that Mums do, that this change in events was playing on his mind, but I didn’t realise just how much until yesterday.

Yesterday, we were talking about his school year group and in particular, the jokes and insults currently being traded amongst the Year 6 boys. I reminded him that he needed to ignore those comments as best he could and instead focus on the strengths of his friendships and the fun they’re now having that SATS are finally out of the way. It was then that he paused in reflection before saying:

…I know Mummy, which is why I’m sure X was making it up when he said that his Mum had said that she’s sick of seeing me in the local paper all time because I haven’t been and anyways, I don’t think that his Mum would have said that….would she…?

I had to take a moment to compose my own thoughts before giving a careful and considered reply because I knew that the very fact that he had mentioned it to me meant that he was more bothered by this seemingly throwaway comment that he wanted to admit. In all honesty, I can’t answer why that Mum said that, though I can make some intelligent assumptions behind her reasoning and am certain that she never expected her child to come into school and say it directly to my son. It just shows that we need to be careful about what we say to, and in front of, our children and encourage them to be kind in their words to others.

I reminded M that our intentions are good. We’re actively trying to raise some much-needed awareness about EGID and that the annual fundraising events that he’s held at school have been the result of us proactively asking to organise them. I’m not ashamed to speak out loud about a condition that impacts us every day and I don’t want M to feel that he needs to hide the reality of what he goes through. However, he also knows he can share as much or as little as he chooses about his daily life and that there will never be pressure from us to do more than he’s comfortable with doing.

We’re lucky. Having spoken out loud to me, and then later to Mike, about this comment, M has forgotten all about it and has happily got on with the rest of his week. His ability to bounce back after a ill-considered remark that obviously cut deep is admirable and truly reflects the resilient young man he is growing up to be. Today both children have proudly gone into school wearing an element of pink to raise awareness amongst their friends. M’s “Dress up as your hero or superhero” day for Over The Wall is currently under way and he was excited to see what his friends would be wearing – he has gone as his very own hero, Ryan (the doughnut man) from Borough22. Most of all, we’ve all done our bit this week to show this disease just how resilient we are and I’m proud to acknowledge that many in the global EGID community have done so too.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.