Tag Archives: restricted diets

All Different, All Equal

This week is Anti-bullying week and this year the campaign has adopted the tagline “All different, All equal” to promote difference and equality in schools. As the Anti-bullying Alliance’s website states, the idea behind this is to “…help children and young people celebrate what makes them, and others, unique and help them understand why it’s important that every child feels included in school able to be themselves without fear of bullying...” This has struck a particularly resonant chord with me as feeling different to classmates is something that not only do I recall from my own school days, but something I am aware both G and M have felt over the years.

For me, and let me be brutally honest right now, I hated every moment of living with T1D as a teen. Not only was I having to deal with the challenges of impending adulthood and puberty like all of my peers, but my T1D added another layer to the emotional mix that I really didn’t want to have to face. At school I felt like the odd man out. I didn’t really know anyone else my age with T1D and I was the first diabetic in my school. I suffered extreme teenage angst about not being able to buy sweets and chocolate from the break-time tuck shop and that seemingly small thing became a massive problem that I struggled to overcome. My friends accepted my differences far more readily than I did and yet I felt alienated from them. My own anxieties and poor self-image became mountains I just couldn’t scale, particularly when some of the other girls in my school year began to exclude me from friendships that had been there since I was little and threw cruel words in my direction which hit incredibly deep.  Whether they had truly identified my lack of self-esteem as an easy target for their unkind comments and actions or not, I can still recall just how devastating that time in my life was for me. I’m sure that I was not on my own with those feelings, but I felt isolated in a world that seemed to be quite happy without me.

Sadly, G struggled similarly during her Infant school years when so-called friends who had helped ease her move to a new school, discovered that her health issues could be used as a taunt against her and caused her unbelievable emotional pain. Thanks to a fantastic and supportive Year 2 teacher, G was encouraged to tackle the bullies and their behaviour head-on and she learned to stand up for herself, something I didn’t learn until I was much, much older. I know that her gluten- and dairy-free diet still makes her feel too different to the rest of her tutor group for comfort and she has struggled with sticking to the restrictions, especially when her friends are enjoying treats that she would love to be able to eat. We’ve worked to fill her lunchbox with foods and snacks that make her feel a little more “normal” and a part of the crowd, and I will continue to hope that this doesn’t become a cause for bullying as she moves her way through secondary school.

Likewise, M’s complex medical needs have left him being subjected to cruel words and unkind actions in the past, something that is not unusual in the world of chronic illness. Whether it is an obvious physical difference, or something more hidden like T1D or allergies, the sad truth is that children can, and will, be cruel. All children are fighting to find their place in the world and will look to find their footing without regard for those surrounding them and especially not for their feelings. As parents we need to teach our children about the beauty in diversity and encourage them to be kind in their thoughts and deeds. My children are wonderfully unique as are their friends and that is something to embrace wholeheartedly and without reservation. This year I will be making sure that they understand the truth in these words: All different, all equal.

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NEAW 2017 – His illness does not define him

Our life experiences influence our view of the world that surrounds us. Good or bad, everything we do or see or hear or learn will affect our outlook on life, on whether we become individuals who see that hypothetical glass as being half-full or half-empty and how we react to our interpretation of that reality. When you’re growing up with a chronic illness as your one constant companion, it can come as no surprise that that condition begins to shape the person you become and the relationships you have with the rest of the world.

Rightly or wrongly, I have encouraged M to embrace his EGID diagnosis and become an advocate for himself and others living with it. M is, without a doubt, so much more than this disease and yet it is an integral part of the young man he is growing up to be. Our local gastro team are keen that M doesn’t view himself as a “sick kid”, that he doesn’t let his diagnosis stop him doing whatever he wants to do or being what he wants to be and those aims sit well with our approach to helping him cope with it all. However, I can’t and won’t agree to ignoring the reality of his life – the numerous hospital appointments, admissions and procedures; the daily medicines; the restricted diet and 12 months with a NG-tube mean that he is not like his friends, like other kids his age. In the last year alone, M has been seen at our local hospital over a dozen times and that does not make him the same as the rest of his classmates. Despite everyone’s best efforts, 2 and a half years after that first feeding tube was placed, M still only eats 6 safe foods on a regular basis and that makes him stand out from the crowd, not just at school, but at every activity or event he attends. He is, in all truth, a “sick kid”, but that label does not sum up who he is as an individual.

No matter what the medics suggest, I can’t pretend that all those experiences didn’t happen to him, to us as a family, but I will endeavour to make sure that M’s illness is not all that defines him.

Yes, he’s a child who cannot eat the same as his friends; but he can eat out and enjoy food with them.

Yes, he’s a child who lives with constant pain; but he has learned to ignore it and overcome it and achieve despite it.

Yes, he’s a child who spends too much time in hospital at medical appointments; but he is developing a confidence to question and understand and advocate for himself.

Yes, he’s had experiences that most adults I know would struggle with; but he has developed tremendous courage and an increasing self-worth in who he is as an individual.

The truth is that, just as my 30+ years with T1D has shaped the woman I’ve grown up to be, M’s life has been, and will continue to be, affected by his EGID diagnosis. We cannot pretend that the difficult times haven’t happened, we can’t airbrush them out of our family history and it would be doing a disservice to the fortitude and bravery of both my children if we tried to do so. They are so much more than the sum of their parts and whilst EGID has an unquestionable influence on the individuals G and M are becoming, it absolutely does not define either of them in their entirety, and nor will we ever let it.

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.

Every Cloud…

Easter weekend, and a piece of bad luck combined with a chance encounter led to the discovery of an absolute hidden gem that we wouldn’t have discovered under any other set of circumstances. G, M and I were enjoying a Saturday out and about, when an unexpected puncture disrupted our day and found us searching for the help of a Kwik Fit centre in the small North Somerset seaside town of Clevedon. The staff warned that it would take a couple of hours to replace my tyre as I was at the back of a somewhat lengthy queue and so the children and I headed in the direction of the town centre to see what we could discover whilst we were there.

Shrugging off the unwelcome stress of the situation, we enjoyed the sun as we chatted and walked together, with G and M laughing and sharing their thoughts on just about any subject that crossed their minds as we wandered the streets. However, the lack of a prompt lunch soon began to catch up on us all and following the advice of the cashier at a nearby shop, we found our way to a local café to see what, if anything, we could have for lunch. My expectations were low and I had managed to pick up a pack of rice cakes that M could eat, whilst I kept my fingers crossed that I might be able to buy something that was not only safe for G, but that she’d eat as well. I could never have imagined the ultimate success story that was about to unfold before us.

Café Fusion is an unprepossessing cafe in this lovely seaside town, tucked away on Old Church Road, nestled between a hairdressers and a charity shop. I took a quick glance at the menu in the front window and didn’t hesitate to enter the minute I spotted the large number of gluten-free sandwiches so clearly on offer to customers. It didn’t take long for G and me to decide what we were going to eat – an egg mayonnaise sandwich on toasted gluten-free bread for G and a cranberry, bacon and brie one for me. M took a fancy to the Apple Tango in the fridge and a quick perusal of the can suggested that this would be a great option for him to enjoy alongside his plain rice cakes. Not an exciting lunch by any stretch, but I hoped that it would fill a gap as a temporary measure at very least.

The waitress was understandably confused that I only ordered 2 sandwiches for the 3 of us and I soon found myself explaining the situation and that M is only able to eat a handful of foods on a regular basis. The chef had obviously been listening from the kitchen and popped his head around the door to ask what M’s safe foods were. Within minutes of me listing the 6, he offered to whip up a serving of plain steamed rice, plain chicken and fresh cucumber for M’s lunch. I couldn’t believe my ears that this tiny cafe was able to offer a completely safe meal without any fuss, something that has never happened without the careful planning and implementation of strategic military-esque manoeuvres beforehand. M was thrilled to hear that he could eat a proper lunch alongside G and me and couldn’t wait for his plate to appear. The food when it came was absolutely delicious and the sight of 3 empty dishes was all the indication needed to show just how good that unplanned lunch was.

It absolutely wasn’t the Easter Saturday the kids and I had in mind when we set out that morning, but it only goes to show that every cloud has a silver lining, even when it comes to complex dietary requirements.

 

The 450th day

449 days…

449 challenging days of trialling one food after another until 17 foods have been tasted and rejected by M’s body.

449 emotional days of soaring highs and crashing lows as hope is dashed time and time again.

449 testing days of comforting and reassuring and convincing an increasingly despondent 10-year-old that we will keep trying, keep persevering until we find that elusive new safe food.

449 long days since M last successfully trialled a food and believe me when I say that we have all felt the impact of every single one of those days.

And then came day 450. 450_banner_closeup

A glorious, cheerful day. A day when food challenge number 18 was accepted and finally, after 449 days of waiting, the sun peeked out from behind the dark clouds and we had success.

This success has been hard-fought for on all levels and we all needed it, not least M. After nearly 15 months on a diet consisting of rice, chicken, cucumber, apple and pear day in, day out, he finally gets to add parsnips to his list and there’s no-one more delighted than him. It’s not been a 100% pass, but it is one that he desperately needs right now and we’ve taken the decision that the boost to his morale is worth so much more than total perfection. We’re only a couple of weeks in and the variation it has already brought to meal-times is, quite simply, a game-changer. From mashed parsnips to parsnip crisps and roasted parsnips to parsnip and apple soup, the options are endless and so are the smiles in our house. And, just like that, those 449 days are over and forgotten, and instead we’ve started on day 1 of our next set of adventures.

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A Mini surprise for a Big birthday

At the beginning of October, I started my second new job since July after being made redundant just before the end of the summer term. This new position is a really exciting opportunity for me as I become Finance and Administration Manager for a local project and even though I never imagined myself being able to say this, I am now grateful for that redundancy as there is no way that I would have even considered applying for this post if I had still been working comfortably close to home. The biggest change has been the huge increase in my hours and I am fortunate that once again I have found an employer who has been understanding about our home situation with M and my current need to be able to work from home on a regular basis. Bearing all that in mind, you’ll understand why baking has dropped down to being a fairly low priority on my list and the presence of xxcakes or biscuits in our house has been practically non-existent. However, with Mike’s 40th birthday looming mid-month, I needed to find some time to attempt, yet again, a version of his all-time favourite dessert – Lemon Meringue Pie – that would not only keep him happy, but also allow G and M to enjoy it too.

Looking back at my blog posts from over the last few years, this isn’t the first time that I’ve tried to recreate this classic dessert, but every time something hasn’t quite gone according to plan, usually the egg-free, rice-based meringue for the topping. The discovery of both rice protein powder and rice vinegar on the on-line supermarket site, FreeFrom Market, suddenly made the prospect something more than a pipe-dream and the Friday before Mike’s birthday saw me desperately trying to whip up a batch of mini meringues, safe for all members of the family. I’ll be honest, the recipe still isn’t quite there and it’ll need some more tweaking to get my perfect meringue, but they tasted good albeit that they were a little stickier than I perhaps had in mind.

I had decided that trying to create one large pie really wasn’t going to be feasible when it came to either my few-ingredients short crust pastry or the meringue itself and so settled on baking mini pies that would be just enough for a rewarding mouthful. I converted a simple short crust pastry recipe to suit M’s allergy needs and, with a few adjustments along the way, managed to produce some fantastic pastry cases which, much to my surprise, baked beautifully and maintained their shape as they cooled. I had already decided to replace the lemon filling with generous spoonfuls of my M-friendly lemon curd and popped the filled tarts into the fridge to allow the curd to set before adding the final touches. As soon as the mini pies were chilled, set and ready to eat, I dropped img_12221a single mini meringue on to the top of each one before serving to my eager husband and child. I will add at this point that neither G or I partook in this particular delicacy – the sharpness of the lemon didn’t appeal to G and the sweetness of the meringue doesn’t agree with me and my T1D tastes. However, despite the fact that only 50% of the family chose to eat these birthday treats, they were extremely well-received and I am reliably informed by both the men in my life that the lemon zest in the pastry when combined with the sharp lemon and sweet meringue was a taste sensation they very much enjoyed.

Rice Two-Ways

When we made the decision to go elemental in an attempt to bring about a reduction in M’s chronic symptoms, I never imagined that the reintroduction of foods would be as fraught and intensely stressful as it has proved to be. In the past 12 months we have made absolutely no progress whatsoever and everyone is stumped about what the root cause of M’s problems actually is, with opinions fluctuating between complications from his EC, “simple” multiple allergies or a physiological problem with his gut. Whilst the teams of medical professionals involved in M’s care try to decide on what direction they should follow next, I’m left stretching my ingenuity to its very limits when it comes to preparing meals for my understandably fed up 10-year-old.

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I’m constantly on the search for anything that will make my cooking life that tiny bit easier and a lot more interesting and love finding products that are both M-friendly and a little out of the ordinary. Like many of you I’ve eaten rice for years, but generally just as boiled rice to go with a tasty chilli con carne or egg fried from the local Chinese takeaway and had never really thought much about it. Since rice has become the staple carbohydrate of M’s diet, I’ve come to love the versatility of this ingredient and continue to be delighted by the many versions of it I’ve uncovered along the way. Rice milk, rice porridge flakes, rice cereal, rice flour, rice crackers, rice noodles, rice pasta, rice vinegar and your choice of plain rice: long grain, brown, basmati, wild or black have an overwhelming presence in my kitchen cupboards and so now do 2 rice-based products that I’ve discovered over the summer.

img_08441First are Blue Dragon Spring Roll Wrappers, which do contain a small amount of tapioca starch, but are predominantly made from rice flour. Having recently perfected my own version of lemon chicken to satisfy M’s longing for some much-missed Chinese food, these seemed like a great addition to the repertoire and I couldn’t wait to make both M and G some M-friendly pancake rolls for dinner. If you’ve never attempted to cook with these before, let me tell you that they are not the easiest ingredient to use, but I suspect that a lot more practice will make a big difference. I set up my workspace next to the kettle, filled a shallow baking dish with boiling water and then painstakingly soaked the wrappers, 1 sheet at a time, before filling them with some thinly sliced chicken, cucumber, apple and pear that I had already prepared. img_08461I cooked them in 2 different ways, interested to see which my discerning duo preferred and was very much surprised by the results when they came in. G loved the bigger roll which was just prepared as I described above, whilst M told me he’d opt for the shallow-fried triangles every time. I am thrilled that the wrappers were so well received by both children and can’t wait to see what else I can cook with them as I’m sure that they are versatile enough to be used to create some sweet treats as well as the more traditional savoury dishes.

img_11031The other is a real store cupboard essential and I can’t begin to tell you how excited I was to discover this item when I was perusing the virtual aisles of the fantastic online supermarket that is the FreeFromMarket. As for when the box of Clearspring Brown Rice Breadcrumbs arrived, nestled in the midst of my other purchases, well, Mike and the children were all summoned by my squeals of joy and then left me to my celebrations, shaking their heads sadly in complete disbelief. I am sure that there are so many ways to use the breadcrumbs in my cooking, but I started by preparing a breaded, stuffed chicken breast along the lines of a more traditional chicken kiev. I made a coconut oil and herb mix, which I carefully squeezed inside the cut I’d made in the chicken breast, before coating it liberally with the breadcrumbs. 25 minutes later and img_11091dinner was ready with a golden brown chicken breast tantalising the taste buds with both its look and its smell. They really were delicious and neither child was very willing to sacrifice a mouthful of their meal for Mum to taste-test herself. Now that the summer holidays are over and we’re heading into the autumn, roast dinners will make a more regular appearance in our household and I’m hoping to use these breadcrumbs to create an M-friendly stuffing for us all to enjoy.

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M’s happy ending

M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.

Home-cooked Chinese takeaway

chineseOne of things that I know M has really missed since his diet became so restricted is the occasional Chinese takeaway shared with the rest of the family. For as long as I can remember our young foodie has loved eating Chinese food and insisted on mastering the chopsticks early on, so the loss of that treat really did hit him hard. Thanks to the amazing team at our local Wagamama, M has been able to enjoy safe Asian food once again and recently I took the plunge and tried my hand at making him a Chinese-inspired meal too. It was never going to be the same as those fabulous meals we enjoyed in London’s Chinatown when the children were little, but hopefully it was a tasty replacement for a much-missed treat.

Lemon chicken is one of Mike’s favourite Chinese dishes and given the base ingredients of, well, lemon and chicken, it seemed to be an achievable goal for my home-cooked takeaway. For once I didn’t turn to my trusty sidekick, Google, for some speedy research, but instead just used the knowledge I’ve stored up over the last few years to see if I could come up with my own recipe for a delicious lemon chicken. I originally considered using lemon juice, water and sugar thickened with some rice flour to create the sauce, but a quick perusal of the fridge brought the last remaining half-empty jar of dairy-free lemon curd to my attention and I instantly decided that that was exactly what this recipe needed.

Having prepped the diced chicken to make a batch of my M-friendly chicken nuggets and with the rice simmering on the hob, I turned to making the lemon sauce, feeling a little like I was concocting a magic potion as I stirred spoonfuls of this with a dash of that in the cauldron saucepan. IMG_0637[1]I’m certain that the authentic Chinese recipe includes soy sauce, but with soya definitely banned from our repertoire for the foreseeable, I tweaked the sharp flavour of the lemon curd by adding a little more sugar as well as some salt, pepper and rosemary until I had a savoury sauce I was confident the children would eat. As I finished cooking the rice, chicken and sauce in my trusty wok, G and M drifted to the table drawn by the delicious smell, eagerly asking what was for dinner. The portions I served soon disappeared as did the children once their plates were empty, which, without a doubt, signalled a new and successful addition to my ever-growing list of M-friendly recipes.

NEAW 2016 – I am an EGID Mum

Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

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This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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Thank goodness for TGI Fridays!

When you’re an allergy Mum, there is nothing better than finding somewhere your entire family can eat safely when you’re out and about. I spend a lot of my time in the kitchen when I’m at home, tweaking recipes and continually trying to find new, tasty and interesting ways to prepare 5 safe foods for M and sometimes I just want a break from it. We have found some firm favourites amongst the chains, who have not only been able to cook M-friendly food when we were excluding just 7 – remember those days? I just about can – but have also impressed us in the last 12 months too. From old faithfuls such as Pizza Express, Giraffe and Bella Italia, to newcomers Wagamama and Jamie’s Italian, my cup quite literally runneth over! Our holiday to Cornwall last summer led to the discovery of an amazing small independent restaurant who catered for M without hesitation and made all the difference on our first holiday with a tube.

tgiWith the start of a new year, we decided to branch out and challenge yet another popular old friend, TGI Fridays. M has been reluctant to visit this restaurant since he went elemental last year and our first suggested meal out after he was discharged from GOSH fell sadly flat, when he refused to stay there because “..everyone around me will be eating chips Mummy…“. As we had not long had to stop the potato trial due to all his problems in hospital, Mike and I could totally understand and were massively impressed that, at long last, he’d been able to tell us his reasons for not wanting to stay. However, never one to be beaten by a near 10 year-old, I bided my time until we once again headed out for a small bit of sales shopping and decided to treat them to lunch as well. M’s first choice was Wagamama, but an ill-timed fire in their kitchen put pay to that idea and I tentatively suggested TGI Fridays as a potential alternative. Although only a couple more days had passed since our first attempt, M felt a little more able to challenge their menu and we set off on our brand new restaurant adventure.

The first thing on our to-do list was to advise the greeter of our allergy needs as soon as we arrived at the restaurant and asked for a table. I always do this when we eat anywhere new, even when it’s just a new location of one of our known safe restaurants, so that neither child has to go through the stress and embarrassment of discovering they can’t cater for them and having to leave the restaurant. The greeter asked the restaurant manager to come talk to us as this is TGI protocol when dealing with customers with food allergies. We explained M’s dietary requirements and he reassured that they could prepare chicken, apple and cucumber for M, though sadly not any rice as their current rice dish contains a Cajun spice mix which we haven’t trialled with him as yet. With M happy that he would be able to eat, we headed for our table, ready to peruse the choices for the rest of the family.

20160103_160912 (1)For those of you not in the know, TGI Fridays has a separate menu for allergies, which lists the lactose- and gluten-free options readily available. G was delighted to see such a selection of starters that were safe for her and begged to be allowed to try one of those as well as her main course. She opted for the BBQ houmous starter with corn tortilla chips, followed by the Bacon burger with fries from the allergy-friendly children’s menu. Having sorted our little Miss out, we’re turned our attentions to the more knotty problem of young Master M and here I have to say, TGI Fridays came into their own. The manager came to sit with us at the table, armed with a mammoth allergy information folder and cross-referenced every single menu item we were considering for both children to ensure the food would be absolutely safe. He advised us that they used separate chopping boards for the food preparation to avoid cross-contamination risks and showed an in-depth understanding of our requirements which reflected the extensive food safety courses I later found out the restaurant chain insists all their managers attend.

The only potential issue arose when we discussed what oil M’s chicken would be cooked in as the restaurant uses either olive or the more generic “vegetable” oil in their cooking. As we are still limited to rapeseed and coconut oil only, I asked if the chicken could be cooked without oil and the manager went off to see what could be done.20160103_160748 I was impressed to discover that before settling on that as an option, he had actually investigated whether they could get hold of any rapeseed oil from one of the neighbouring restaurants for M’s chicken breast, but had rejected that option when he discovered those restaurants couldn’t guarantee that there was no cross-contamination risk. Instead, the chefs prepared the chicken oil-free and the speed at which it disappeared from M’s plate is a testament to how well prepared and tasty this dish turned out to be. G’s food vanished in similarly quick fashion and Mike and I breathed a huge sigh of relief that our risky restaurant choice proved to be such a success.

*following our visit, I discovered that TGI Fridays also have an impressive allergy menu on-line, which allows you to select the foods you’re avoiding to see what choices you have. This is a great tool to give you an idea whether they can cook for you or not, but nothing beats talking to the restaurant managers themselves.