Tag Archives: Conditions and Diseases

Shocking Customer Service

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

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

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

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

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

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

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

Charity Cut

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

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

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

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

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

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

Perfect Faces for Radio

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

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

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

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

Bitter disappointment

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

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

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

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

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

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

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

Pub dinners and Picnic lunches

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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

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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

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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

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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

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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.

NEAW 2017 – No man is an island

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Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

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.