NEAW 2017 – Shared Experience

If there’s one thing the last few years have taught me, it’s that it is truly worth reaching out and sharing the story of our experiences, as it is thanks to those who have had the courage to share their stories with us that we have found the strength and courage to persevere and carry on, even when the hardest of decisions have had to be made. Talking about the challenges that have faced us, sometimes on a daily basis, is unquestionably therapeutic and can often be a self-centred process, but I’ve learned that sometimes, when I’m speaking about a moment that represents only a small part of a much larger picture for us, that is the thing that speaks most into the heart of a matter that is a seemingly insurmountable one for another family. I’m grateful for those who have taken the time over the life of my blog to get in touch and let me know that a post I’ve written has sometimes made what is, for them, a big difference at that time in their life.

Today is the start of National Eosinophil Awareness Week 2017 (#NEAW2017), our fifth year of finding new ways to talk about EGID and telling those in our community, and beyond, about this disease. Last year, we went all out with our approach to raising awareness and raising funds for the charity, Over The Wall: I appeared for the third year in a row on our local BBC radio station, talking about life with M and with EGID, and our local paper also ran another story highlighting what we were trying to do. We attended some community summer fairs to hand out leaflets about EGID as well as running some mini carnival games to boost our fundraising total. M took some of those games into his school and shared in assembly the short film that he and G had created to explore the impact of EGID from his point of view. Likewise, G’s secondary school offered their support and ran a Year 7 non-uniform day and asked every tutor group to show their film. We extended our fundraising efforts past the third week of May and, with the help of our regional theatre who kindly agreed to have collection buckets available for 2 weeks at the end of each performance, we managed with the help of the wider community to collect more than a staggering £1,000, which I not only know will have been put to good use, but have seen in the fantastic OTW South Siblings Camp that G attended for the second time just a few weeks ago.

This year we’re taking things a little easier, though I’m still planning to write a blog post a day for the week and as a family we’re once again taking on the challenge to “Eat like M” for the duration. Our week starts with another radio appearance, with this year marking the debut appearance of M, and G if she deigns to give more than her usual, teenage monosyllabic answers on air. I am filled with some slight trepidation as to what might come out of their mouths as they speak live during the programme, but I’m looking forward to hearing what they both choose to share about life with EGID. As M’s career at his incredible Junior school draws to an end, the Headteacher has agreed to support our awareness-raising campaign for the final time and is helping M to host “Dress as your Hero/SuperHero” for the day on Friday May 19th.

We have also asked for donations of any unwanted fancy dress costumes to send to Over The Wall as part of their appeal this year. They are looking to replace as much of their existing stock as possible for camp and whilst they are grateful for any and all that they receive, they are particularly looking for costumes to fit teenagers and adults. If you have some lying around your house and want to help support this amazing charity, you can find the Head Office address to send those costumes to here. All in all, I have no doubt it will be another busy week, but hopefully a good one too and of course, you can all do your part to help us by sharing my blog posts wherever you can to reach out to your community and share our EGID experiences.

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

May 8th: No matter what’s going on, there’s no escaping #EGID or leaving it at home, even for one day. For all those facing exams over the coming weeks, their EGID will be just one more challenge that they have to survive.

Today, this is for M – and his schoolmates and the other Year 6s across the country who are taking their SATs this week. We’re so proud of you: of the obstacles you’ve already overcome and your determination to succeed. Just remember, the results really don’t matter.

Mini Cycling Adventures

A month ago we spent our Saturday afternoon in what can only be described as a most unusual way for our particular family. It had all actually started a few days before, when Mike’s bike had developed a persistent flat tire that no amount of minor repair work was going to fix and he finally decided to take it to our local Halfords store for a complete overhaul. Unfortunately, the prognosis wasn’t good and sadly Mike had to come to terms with the terminal diagnosis that his bike just wasn’t going to make it and it was time to think of finding a suitable replacement. Not only did Mike need to urgently replace a crucial part of his daily commute, but my Mum had also been reminding me that I needed to actively do something to buy myself the bike that she has bought me as a birthday present for 2 years in a row, and so we headed back to Halfords to see what we could find.

If I was to say that G and M were not too enthused by the prospect of an afternoon investigating potential bike purchases for Mum and Dad, it would absolutely not be an exaggeration, but they really didn’t have much of a choice and so they begrudgingly came along, grumbling all the way. When we first arrived at the shop, it seemed fortuitous that they were having a end-of-season sale, but I really should have realised that being April Fool’s Day, the joke would ultimately be on us. Mike had already done some investigating into some options for me and I swiftly settled on a purple Apollo Elyse that would be everything I needed for future family cycling adventures.

And then the fun started. Whilst Mike explored the 2 floors to see what choices he had, both children took matters into their own hands and found bikes that would suit them too. We had been briefly discussing the fact that both G and M were starting to outgrow the bikes they had at home and the unquestionable allure of some great deals in their end-of-season sales plus a further negotiated discount because we were buying 4 bikes, instead of the anticipated 2, meant an attractive offer that we just couldn’t turn down.

It took a couple of weeks to pick up the bikes as they had to be ordered, delivered and serviced before we could finally take them home. Mike’s bike was pressed into instant service and the children were keen to get theirs out for a test run as soon as was humanly possible, so the Easter holidays came at the perfect time to allow them out on some mini adventures with Mike. However, I hadn’t had the same opportunity until last weekend dawned with the most glorious weather and with no homework left to do for either child. We decided to head out in a different direction than the ones they had been in before and cycled along the country lanes winding through the farm land and fields that surround our house. We cycled to the next village and back, not a huge distance by any stretch of the imagination, but a 5 mile introduction to what promises to be some great family adventures for 2017.

Giving fair warning

It might be late on a Sunday evening, but tomorrow sees the start of May and just as in previous years, I’m giving what I consider to be fair warning!

The 3rd week of May is National Eosinophil Awareness Week 2017. For the second year in a row, I will be trying to post a new photo, fact or update on my Facebook page every day for the whole of May, which of course will include my regular daily blogs during the week itself. With M’s SATs and some tight deadlines at work, this will be no mean feat, but one that I will be determined to achieve if at all possible. Some might happen earlier than others, some might simply be repeated from last year, but the important thing is that we’re raising awareness of #EGID.

Please feel free to share and help us reach as many people as possible.

Rediscovering Mozzarisella

Three years ago, as this post reveals, I discovered Mozzarisella at the Allergy and FreeFrom Show, which was received with mixed success by my discerning youngest foodie. M enjoyed the flavour when it was added as a topping to his pizza, but he was less certain by its slimy texture and whilst that first block bought was eaten, we didn’t bother buying it again. However, as we head into the third year of M’s heavily restricted diet, he’s become more keen to explore any food that can be considered safe for him to enjoy and has been asking for a retry of this rice-based cheese.

I honestly can’t remember if the range of cheeses was as extensive then as it is now, but I was impressed to discover 6 varieties of Mozzarisella and whilst they can’t all be considered safe for M, there was enough choice for me to pick 3 I thought might make a difference to mealtimes – the original mozzarella-style, the cheddar-style slices and cheese slices with basil. I didn’t tell him I’d ordered the cheeses until the day they arrived in the post and it seemed a sign of success when the parcel reached us on his birthday. He was so excited to unpack the box, treating it very much as an additional and unexpected birthday present, and struggled to decide which type to try first. At the end of the day, it really didn’t matter as all 3 of those choices were a big hit and the sliminess appeared to no longer be an issue.

M’s mealtimes have really been revolutionised, from being able to have “cheese sandwiches” (rice-cakes and mozzarisella cheese slices) in his school lunchbox to cheesy pasta for dinner and we have made a huge stride forwards to him feeling that his meals are a lot more like those of his friends. I’ve just placed another order for more cheese at the great Veggiestuff website and have decided to put their cream cheese alternative to the test too. It might seem like only a small thing to many, but rediscovering Mozzarisella at this point in time has proved a much-needed boost to his flagging spirits, now I just need to revisit and reinvent pizza for him too!

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.

 

A touch of Disney magic

Three months since Christmas and nearly all of those festive treats have disappeared from the kitchen cupboards to be replaced with Easter ones instead, but last weekend G finally got to enjoy her Christmas present, just in time for the Easter break. Having waited so long for the day to arrive, we decided to make it into a mini family celebration,  starting with a car journey to Cardiff with G and M wiling away the time singing along to the Cats soundtrack. Once we arrived, we started with a brief stroll into the City centre, looking for the perfect place to stop for an early tea.

I had done a little research before we left home as I was keen to find somewhere new to eat and was hopeful that Mexican chain restaurant, Wahaca, might be able to provide us all a dinnertime treat. Before we were led to our table, I spoke briefly to our hostess about the somewhat complex dietary requirements we have at the moment and was assured that she was confident that they could put together a safe meal for us. I took my seat, clutching their comprehensive gluten-free menu and accompanying allergens listing to study whilst we tried to choose our dishes. Wahaca is a new dining experience for us all and we were hard pressed to know where to begin with our choices, especially as we had no real idea about portion size.

Mike and I opted for their Mexican Feast to share, which is made up of a number of smaller portions from the menu, including tacos, quesadillas, tostadas and empanadas, and was more than enough to fill us before we reached our final destination for the day. I was impressed with their gluten-free menu, which explains that there are a mix of dishes available, some that are completely gluten-free, whilst others are suitable for those with a gluten intolerance. G pondered the menu for a long time and struggled to reach a decision, not least because so many of the dishes include dairy as well as a spiciness that she would prefer to avoid. In the end, she actually ordered from the Kids menu, where she could have grilled chicken in soft corn tortillas. There were a few too many vegetables adorning her plate for her liking, but she did eat the rest in fairly quick fashion.

Our new approach to food challenges means that M can occasionally add an extra into his dish and I had my fingers crossed that we might be able to combine a little onion to his meal to add some flavour, but unfortunately their green rice included vegetable stock and garlic as well,
which would definitely be a step too far at the moment. After a lengthy discussion with the restaurant manager, M opted for a double portion of grilled chicken, cucumber and apple, all washed down with a Virgin Mojito, although the last didn’t quite hit the mark. Our meal was nicely finished with a dairy-free hot chocolate for G and a coffee for me. We were once again disappointed by the lack of choice when it came to dessert and instead decided to give it a miss and head on to our final destination.

Dinner done, it was off to the Cardiff Motorpoint Arena for 100 years of Magic marked by Disney On Ice with one very excited young lady and a slightly less certain younger brother. G has been desperate to go to see Disney on Ice for a long time and the evening really was fantastic as she loved every moment of it. Despite his initial reservations, M was equally spellbound, even during the lengthy part dedicated to the story of Frozen. From everybody’s favourites, Mickey and Minnie Mouse, to Tiana and Prince Naveen from modern classic, The Princess and the Frog, there was more than enough to keep everyone entertained. The skating was superb, the spectacle fantastic and the songs had many in the audience clapping and singing along. G didn’t stop smiling the whole evening and it really was a Christmas present worth waiting for without a doubt.

 

OTW Siblings #Take Two

This time last year, this happened:

and since the start of February, when the email finally arrived in my inbox confirming that G would once again be heading off to the depths of Dorset for the fabulous Over The Wall South Siblings Camp, the clock has been counting down. I’m surrounded by reminders of this amazing organisation wherever I look, from the screen saver on my phone to the calendar on my desk at work and it’s reflected every time I hear G or M, or sometimes both, bursting into a song from their time away at camp.

The next 5 days are going to be busy ones as I wash, iron, sort and pack G’s clothes for next week. We need to make sure she has enough for every eventuality – sunny days, wet weather, swimming, archery, arts and crafts, the talent show and the all important disco. Unlike last year, when she refused to even consider being part of the talent evening until she got there and then taught her team, the totally epic Purple Girls, a dance routine to Omi’s “Cheerleader” track; this year G is torn about which talent in particular she wants to perform. It could be a clarinet solo, which M would love her to do, or it might be a new dance routine, this time with costume. I’ve told her she really needs to have made her decision by the weekend, so I can ensure she’s got everything she wants with her when we set out on Monday. We’re so thrilled that G has the opportunity to benefit once again from the fantastic work done to support siblings of children with health challenges and I can’t wait to hear all about this year’s week away from home with OTW.

You may remember that since G’s adventures with Over The Wall last year, we have been raising awareness and funds for this incredible cause and I created this video to show our reasons for supporting them:

Birthdays, exams and an awards ceremony too

The last 10 days have been busy ones and I for one am glad to be heading into the last week of term, though the dawning of the school holidays definitely does not equate to any time off work for me this year. Looking back at my blog posts from previous years, it does appear that March and April are consistently a hectic time for us and this year was no different. World Book Day passed surprisingly easy, with M heading to school in his own clothes for his school’s Roald Dahl-themed day as he chose to represent “…a material witness at the trial of Goldilocks, Mummy…” in Dahl’s version of that well-loved Fairy tale.

We seamlessly segued from my 40th celebrations to M’s 11th birthday and onto my 4th blogaversary before celebrating Mother’s Day in fine style too. School presented its own challenges to both G and M, with homework tasks, concert rehearsals and posters revising the finer details of grammar and punctuation – fronted adverbials anyone? – filling our evenings and weekends. Next came 2 sets of exams: Performing Arts exams for both children with their Stagecoach school, followed just a few days later by M’s Grade 1 Cello exam, which I’m delighted to say he passed despite a persistent reluctance to give much more than a cursory nod to his daily practice. Continuing with the music theme, G performed with the school clarinet group at her school’s Spring music concert last week, whilst M is singing with his school choir at a regional music concert involving children from Junior schools across our county this week.

On top of all of that, we also managed to squeeze in a trip to London for 4 and an evening spent celebrating the success stories from this year’s FreeFrom Food Awards. Once again held at the Royal College of Physicians near Regent’s Park, the evening was a glittering event designed to recognise some of the fantastic freefrom products nominated this year and was a great opportunity to not only catch-up with friends from the allergy blogging world, but also try those tasty treats that had pipped their competitors to the winning post. Hosted by the fabulous Michelle Berriedale-Johnson, director of the FreeFrom Food Awards, with a helping hand from restaurateur, celebrity chef and awards patron, Antony Worrall-Thompson, the Awards were a real testament to the changes brought about in the Freefrom world over the last few years.

The complete list of winners from #FFFA17 can be found here, but the big winners of the night were Irish bakers, Bfree, whose Sweet Potato Wraps are impressively top 14 allergen free and won high praise from many of the judges for being “…enormously versatile, beautifully soft and pliable, a lovely warm colour and tasting delicious…” This year was the 10th anniversary of the FFFA and to acknowledge this remarkable achievement, nominations had been invited to recognise a Freefrom Super Hero from within the industry itself. There were 5 very worthy nominees, all of whom are, without a doubt, heroes within the Freefrom world, but there could only be one winner and the inspirational Clare Marriage of Doves Farm was chosen for her unquestionable dedication to the production of numerous flour blends that have transformed the lives of those having to bake freefrom.

It was a fantastic night and it was wonderful to be able to mingle with the crowds of fellow freefrom foodies, rather than negotiate them with a small child in a wheelchair as we did last year! G not only enjoyed helping herself to a number of the goodies on offer on the Winners’ Buffet, finding a new gluten-free favourite with Kelkin’s chocolate-flavoured teacakes, but also found the courage to strike up a brief conversation with her very own Super Hero, Lucinda Bruce-Gardyne, the creator of G’s gluten-free bread of choice, Genius. I can’t wait to see what the year ahead brings for the Freefrom industry and am definitely looking forward to #FFFA18!

A fine Fish supper

With an unbeatable combination of good health all round, a new approach to food challenges and an accommodating restaurant, this year we had one of the best Mother’s Day lunches that we’ve enjoyed in a long time. Last year’s celebration fell flat, when my Mum was relegated to her sick-bed and left Mike, the children and me to savour yet another fantastic family meal at what has become one of our all-time favourites for allergy-friendly meals, Wagamama. However, a recent visit to our local Wagamama for M’s birthday tea meant we didn’t fancy a return visit quite so soon, after all it is possible to have too much of a good thing and as much as I fancied treating Mum to a late lunch at the amazing Cafe Nouveau, it was just too far to trek this weekend. Fortunately, the opportune coincidence of trialling prawns and our Sunday lunch plans meant we could visit an old haunt that received recent recognition as a gold award-winning venue at the 2016 FreeFrom Eating Out Awards.

Of course, we couldn’t just turn up on the day assuming that we’d be able to safely feed both children, so a preliminary phone call to not only book a table, but also run through all of our allergy requirements for the meal was an absolute necessity. We have been incredibly lucky in the past as we don’t always call ahead and have still found ourselves able to eat out as a family, but a special meal such as this one required a little forward planning. Our restaurant of choice was the marvellous Fishers Restaurant in Bristol and we had our fingers crossed that the inclusion of prawns for the day would make it possible for us all to enjoy a lunch at this great seafood restaurant. The staff were fantastic when Mike called and reassured him that not only could a safe prawn starter be prepared for M, but, as they were including chicken as a main course for Mothering Sunday, prepping chicken, rice and cucumber would be an absolute breeze too.

We had high hopes for our first 3-course meal in a long time, but the generous portion sizes left us all feeling full and satisfied before the dessert menu could even be properly considered. Fishers were able to adapt most of their menu options to be both gluten- and dairy-free to suit G and she was thrilled to be able to order calamari with a sweet chilli sauce, something that is an unexpected favourite with my oft-time picky oldest. She was also delighted by the gluten-free bread basket that she was able to enjoy whilst waiting for her starter to arrive and there was barely a crumb left by the time the calamari appeared. Mum settled on mussels, Mike picked smoked salmon and M and I enjoyed a similar starter of tempura tiger prawns, though mine came with a soy dipping sauce. I would love to be able to share with you the plate of prawns that M was presented with, but my joy at being able to watch my foodie savour every single mouthful meant that I forgot to pull out my phone until that plate was cleared.

G and M’s choices for their main course were a little more mainstream, with M being greeted with a fantastic-looking plate of plain rice, grilled chicken and cucumber batons, whilst G’s huge plate of gluten-free haddock and chips was enough to feed a small army. I was pleased to learn that they have a dedicated fryer to cook all of their gluten-free offerings and seemed to be very much attuned to the risks of cross-contamination for their freefrom guests. We had already confirmed that M could eat the lemon sorbet for pudding and were keen to see what was on offer for G. Sadly, this is when disappointment really hit as despite their brilliance in providing lots of gluten- and dairy-free alternatives for the savoury courses, dessert was a real let-down. The only choice readily available for G was sorbet, which she absolutely hates and when pushed, all the kitchen could offer was the apple crumble – without the crumble. We had heard that in the past, they had been able to go off-menu and cook a gluten- and dairy-free banana fritter, but we were told that they were no longer able to prepare that as an alternative. It was perhaps lucky that G and M were both full to the brim from the rest of the meal and didn’t really want to stick around any longer for pudding and so the rest of us willingly abandoned the sweet finale to our meal and instead travelled back to my Mum’s for a refreshing cup of tea.

Fishers was a great choice for lunch and we were impressed at their willingness to accommodate some tricky dietary requirements. However, the lack of an imaginative dessert menu for those with allergies was extremely disappointing and an area that could definitely do with some improvement to make it a truly excellent Freefrom restaurant.