Category Archives: Chronic Illness

What does COVID-19 mean for you

I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

The Power of Sunflowers

Nothing brightens up a gloomy day like a beautiful sunflower. Tall, majestic and reaching for the sun, its bright yellow colour is sure to cheer up even the darkest of moments. There really is just something intrinsically cheery about this flower to my mind; but did you know just how powerful sunflowers can be?

I am, of course, not talking about the flower itself, but rather the incredible Hidden Disabilities Sunflower scheme, launched in 2016 in response to a query from Gatwick Airport as to how to better its help to travellers passing through its doors and since adopted by numerous airports, supermarkets and other stores and businesses across the UK as well as slowly being recognised worldwide. The scheme uses bright green lanyards covered with sunflowers to indicate that the wearer has a hidden disability and therefore might need additional support, time or space to use that particular facility. All done in a subtle yet visible way.

We hadn’t engaged with the sunflower scheme previously, but given G’s recent challenges with panic attacks and anxiety as well as M’s ongoing health issues and his own anxieties when it comes to travelling with his medicines and foods, the time finally seemed right to give the sunflower lanyards a go during our Christmas trip to New York. I requested them through the Heathrow airport website and was delighted with how promptly they arrived with us with no hassle. They formed a part of the big reveal on Christmas day and both children were wonderfully willing to wear them as we travelled with G having to be reminded to remove hers once we reached our hotel in NYC.

The support given throughout the airport was fantastic and extremely thoughtfully and carefully given. The Virgin Atlantic staff at check-in approached Mike and I to see what additional help we might need, but didn’t ask questions in front of either G or M. Our journey through security was remarkably easy as the airport security staff opened a new lane for us to go through without comment and were then careful to minimise the examination of M’s medicines and the food that we were having to carry with us. I was impressed with just how well all the staff working at Heathrow appeared to have been trained and how they offered us help and support without making a fuss.

The only problem encountered was that M found the material of the lanyard uncomfortable to wear, complaining it irritated his neck, so instead I attached it to his backpack, which made it less easy to spot on a first glance. I’m sure that he will not be the only person who will struggle with this because of sensory issues and so was glad to be able to give some constructive feedback to what is otherwise a fantastic scheme. Our sunflowers were unquestionably powerful during our Boxing Day adventures and will no doubt be something we make use of again the next time we travel.

Our Virgin Atlantic Experience

There’s been a lot of criticism across social media over the last few months about the attitude of Virgin Atlantic towards passengers with food allergies on their flights, in particular relating to those travelling with nut allergies. Now, I can’t comment on how they perform in those situations as we are fortunate to have no known nut allergies, though truthfully M hasn’t had a peanut in years, so we wouldn’t know if he is allergic or not. However, I was interested to see how they would do when it came to the allergy requirements of G and M, especially given our amazing experience when we flew with them to Florida in 2014.

Our first challenge was having some safe milk for M to drink for breakfast in the Heathrow airport lounge. Unlike the fantastic V-room at Gatwick, who stocked B-free bread for toast and brought in 2 cartons of rice milk just for M and G, the Heathrow lounge was less able to help and seemingly less willing to try, simply saying that their staff wouldn’t be able to bring the rice milk through security, so it was up to us to provide it if we could. I was extremely frustrated by this response when I received it, but rather than sit and moan about their inability to be as helpful as I would have liked, instead decided to contact M’s consultant at our local hospital to ask if he would write an updated medical letter stating that we needed to carry a number of safe food items through security for M. Less than 2 weeks after my request, 2 copies of that letter landed through our door and we were easily able to walk through security with the carton of rice milk in our hand luggage without issue once the letter had been seen. I always recommend carrying medical letters and copies of prescriptions when you travel and this experience proved once again, just how valuable that can be.

Despite that rocky start, I hoped things could only improve and as we had booked our complete holiday through Virgin, I had already asked that notes be added to our booking to state that both children had food allergies. I also updated our booking confirmation online with a request that G and M had the gluten-free meals and followed that up with an email noting that both also needed to be dairy-free if possible. I mentioned that M ideally needed to avoid egg and soya if it was at all possible, but knew this was a lot to ask and simply leaned on the truism that you never know what’s possible until you ask.

The meals that arrived with us for both flights were both gluten- and dairy-free, but included a couple of items for M that contained a small amount of egg. This time there was no mix up with meals going to the wrong seats and whilst the meals offered were not exactly what G would have chosen, M tucked in wherever he could. As always both of their backpacks, and mine, were well-stocked with some safe snacks to supplement what was provided and so we were able to muddle through quite successfully.

 

Our Virgin Atlantic experience is one that I would definitely count as a success and neither child, M in particular, suffered any fallout from what they ate on the flights. Not only were the cabin crew diligent with what snacks and drinks they offered to them, but they were also fantastic in helping us celebrate G’s 16th birthday for just a little bit longer and in great style, with a visit to the cockpit for both children on our flight to New York and a birthday present of some “lounge wear” (pyjamas to you and me) and some chocolate on the way home.

Eating Out with Allergies in New York

As an allergy Mum, I try to do as much research as I can about eating out before we go and our Christmas trip to New York was no different. There were some absolute givens in our restaurant choices – Hard Rock Cafe New York anyone? – but we’re always open to adventure and seeing what we can find whilst we’re in town. My research had truthfully started 3 years ago, when Mike and I visited on our own and we found ourselves taking notes each time we found somewhere that might be able to feed the children or, at very least, allow us to buy some safe foods to eat in our hotel room. We travelled with our suitcase full of food as usual, so I knew that we would have enough snacks to keep G and M going once we arrived on Boxing Day and for the days to follow.

5 Napkin Burger was a restaurant we had actually found on our first night in NYC 3 years ago and we were delighted to discover that they are able to cater for gluten-, dairy- and egg-free diets too. Within 10 minutes walking distance of our hotel on 43rd Street, this proved to be the perfect location for our first night in NYC with the children and they enjoyed the meal so much that we went back a couple of days later with my Mum in tow. The restaurant was beautifully decorated for Christmas as well, which made it the perfect start to our surprise holiday. The burgers were succulent and tasty, the servers managed the pernickety nature of G and M’s food orders without batting an eye and the food was quite simply fabulous. I was impressed to see a small range of GF ciders, beers and other drinks also prominently displayed on their menu, making it a truly excellent restaurant for the free from diner.

Statue of Liberty Crown Cafethis was one of several unexpected successes whilst we were in NYC. Mike, the children and I needed to grab a fairly quick lunch after our climb to the Crown of the Statue of Liberty as we were headed off to the One World Observatory and 9/11 Memorial Museum next. I was hopeful we might find something that G and M could eat, even if it was just a plate of fries, so was delighted to see that the Crown Cafe also served gluten-free burgers. G chose to try their hot dogs, whilst M kept it simple with a grilled chicken burger. The portions were generous, the food delicious and more than enough to satisfy the appetites of my hungry pair.

Ellen’s Stardust Diner: This is a NYC must-do and somewhere that I knew we would have to visit with G and M. The breakfasts there are amazing, but definitely not M-friendly with the prevalence of eggs on the menu, so we instead opted for a late lunch on our penultimate day in the city. The queue at Ellen’s is nearly always lengthy, but it’s definitely worth the wait, in my opinion, and so it proved once again. The skies were grey and overcast, and fortunately my Mum had joined the queue whilst we headed back from a morning spent at the American Natural History Museum. We were seated at one of the upstairs tables, which were perfectly placed to allow both G and M to have uninterrupted views of the main restaurant itself. The menu is unquestionably limited for those with food allergies, so we were glad to spot a gluten-free pasta and meatballs option which M plumped for, whilst G stuck to her favourite of hot dog and fries, this time without a gluten-free roll. M had a generous serving which more than beat even his healthy appetite and G was left pleasantly satisfied by her meal. The highlight is, of course, the entertainment provided by the waiters and waitresses working in the restaurant and G and M spent a long time discussing who was their favourite as well as which of their teachers they thought might enjoy going to the diner.

Hard Rock Cafe New York: No holiday would be complete without a visit to the local Hard Rock Cafe (assuming there is one) and Mike ordering the local legendary burger. Centrally located in Times Square and less than 5 minutes walk from our hotel, we managed to fit in lunch before our afternoon at Radio City Hall. The good thing about the Hard Rock Cafe is that the children always have a few options to choose from and this time M decided to try something a little different and ordered the Smokehouse BBQ combo of baby back ribs and pulled pork. For her part, G stuck to her favourite of the BBQ pulled pork sandwich with fries and devoured every morsel as usual.

Grand Central Market, Grand Central Station: This was a great find for picking up some bits and pieces for a quick and easy lunch on the go. We discovered the NOGLU gluten-free bakery, where G and M were able to choose from a selection of baked goods including croissants for G and cookies for M. It was then on to Sushi by Pescatore to pick up some California rolls for M as well as a selection of sushi for Mike and me. Add to all of that some fresh fruit, salami and goats’ cheese and we had a perfect packed lunch to enjoy between sightseeing stops.

#FFFA20 Confectionery

Now, I fully accept that there may be some of you out there wondering what on earth a PWD* is doing even considering judging a category at the #FFFA20 called “Confectionery”, but let me assure you, it means that I don’t tend to over-indulge in the first few mouthfuls and with 35 entries in total – 32 of which were chocolate-based – that’s definitely a good thing! On a more serious note, my Freestyle Libre gives me the opportunity to have tight control on my blood sugars at all times and helped me keep things on an even keel that afternoon.

 

I love judging this category as I have 2 food-allergic children who enjoy the occasional sweet treat and it’s always a great opportunity to find something new to tickle their taste-buds. After a busy morning trying the delights of “Meaty and Fishy Ready Meals” and a wonderfully refreshing light lunch prepared by Michelle and her #FFFA team, we were ready and set for the challenge ahead. And believe me when I tell you that tasting and judging so many sweet entries really can present some problems, especially when trying to give constructive comments to the 3rd dairy-free dark chocolate in a row!

These were my highlights:

M&S Fizzy Dinosaurs: In a category that was dominated with chocolate offerings, it was great to find these sweet treats. It took a while for us to realise that M reacts to gelatine, so we are always delighted to find sweets that are gelatine-free and delicious. He and I both love sour, tangy, fizzy sweets, so I knew the moment I tried these dinosaurs that they would be a big hit with my youngest…and the speed with which the bag I took home with me disappeared would absolutely support that!

Truffle Pig Truffles: We tried several truffle selections on the day, and these stood out from the crowd with their wonderful Butter Nut variety, which was perfectly reminiscent of their more well-known dairy counterpart, Ferrero Roche. The peanut butter content obviously means these are not safe for those with nut allergies and disappointingly to me, even though they are vegan and delicious, they are not soya-free either. A great treat that would be a brilliant gift and make the recipient feel truly spoiled, but not one for our household yet.

My Sweet Chickpea: The surprise success story of the day for me, and one that has proved to be popular at home too. There were 2 flavours that we were lucky enough to try: cappuccino and coconut, and both were delicious. The chickpea was not at all detectable, something which I tried out and proved with G, who was surprised to learn it was a key ingredient. Dairy-free, soya-free, hidden chickpeas and snack-size – what isn’t there to like about these?!

Moo-free Sea Salt & Lime Chocolate: I am not the biggest fan of anything salty and I definitely do not like caramel, so the whole “sea salt and caramel” revolution has passed me by, even though I’ve successfully created a safe version for G and M. So, I was intrigued by the lime and sea salt flavour offered by Moo-free and this will probably have me raving for weeks about it. A perfect balance to the sweetness of chocolate and very definitely more-ish. This is my winner of the day, not least because it was one of the few chocolates that was both dairy- and soya-free.

All in all, it was a great day of judging with lots of memorable products and not too many that completely missed the mark for me this year. The final award winners will be announced on 28th April, so keep an eye on your social media to find out who won those much-coveted golds.

*Person With Diabetes

#FFFA20 – 5 years on

Last week saw me back in London for one of my all-time favourite events of the year: judging a couple of categories for this year’s Free From Food Awards (#FFFA20). It hardly seems 5 years since I completed my first stint and I can honestly say that every year since has been fantastic. It’s a day spent with an amazing group of people from the free from community, be they bloggers, allergy sufferers, parents of children with allergies, food manufacturers or producers. Every year sees me widening that tribe of mine and I absolutely love getting to know new people and oft-times linking faces to names I’ve seen across the various social media platforms I frequent.

This year saw me return to 2 of the categories judged at my first FFFA in 2016 – “Meaty & Fishy Ready Meals” and “Confectionery”. As ever I’m always on the lookout for new possibilities for both G and M and even more so this year as we see the number of safe foods for M slowly, but steadily increasing. I find it fascinating to see what products are entered into each category, particularly with the “Meaty & Fishy Ready Meals” as the range of options can be so wide. From 10am, we were tasting and critiquing breaded fish, breaded chicken, sausages, burgers, a few microwave meals and even a prepacked sandwich. What was particularly great this year was that there was nothing that was really dreadful and whilst not everything might have been to my taste, the final award winners are all very much deserved in my opinion.

My own highlights from this category include:

M&S Made Without Wheat Honey Roast Ham and Mature Cheddar Cheese sandwich:  Honestly, if I hadn’t known that I was eating something freefrom, I absolutely would never have guessed. Forget dry bread, hole-y bread, doesn’t-really-taste-like-bread bread…this sandwich was unquestionably as good as its gluten-filled counterparts and generously filled with ham and cheddar cheese. If I had to find a criticism, perhaps that it is a little limited in just being gluten-free, but that really is being incredibly picky. It didn’t really “fit” with the rest of the entries in the Ready Meals category, but with no “Foods to Go” category this year as part of the #FFFA20, I don’t object to it having been entered. This is definitely one that I would recommend to anyone needing or wanting to follow a wheat-free/gluten-free diet.

Co-op Irresistible Pork Sausages: “Wow!” – my honest comment after a taste of these sausages. We are, without a shadow of a doubt, a family that enjoys any meal including sausages and indeed G’s favourite and go-to meal is a plate of bangers and mash. These were delicious – juicy, succulent and absolutely more-ish, the description of these GF sausages as “irresistible” couldn’t be more accurate. We buy nearly all of our meat from our local farmers’ cooperative or from our small-holding friends, but it was great to discover such a good product at a competitive price in a supermarket chain.

Co-op Chunky Breaded Cod (MSC-approved): There were several free-from fish fillets to compare, as this photo shows, but this is the one that absolutely stood out to me. The crumb coating was crispy and robust and the piece I took didn’t fall apart on the fork before it had left the plate and reached my mouth. Well-seasoned, tasty and a balanced mouthful where the fish was definitely the highlight. Even better, the cod is responsibly sourced and MSC approved, which really made it stand out from the crowd.

Tesco Free From Chicken Korma with Rice: A more traditional ready meal in my eyes and a fantastic one at that. Not only gluten-free, but top 14 allergens free and included an interesting mix of brown rice and quinoa in the dish which made it stand out from a competitive crowd. It has been on the supermarket shelves for a little while as this was one of the dishes we were lucky enough to be sent to try just after their launch, but it reminded me just how good these ready meals really are. A rich creamy flavour, which was well-balanced and didn’t taste too watery despite being microwave cooked, something I have found to be the case with other similar ready meal options.

As you can see, it was a real mix of what I would consider the more traditional ready meals that are ready in minutes and foods that need little preparation other than cooking. It was great to see offerings from many of the major supermarkets and, whilst I didn’t mention them above, there were also some good options from both Aldi and Lidl. I love seeing more and more supermarket chains coming on board with their free from food choices and making them more available and affordable than they perhaps have been before.

Charlie & the Chocolate Factory Afternoon Tea, One Aldwych

Given the morning had been spent tramping across the length and breadth of London, you can only imagine how delighted M and G were to eventually reach our final destination – One Aldwych Hotel. Ever since I had settled on taking my Mum to the Royal Opera House as part of her 70th birthday celebrations, I knew that I wanted to find somewhere for an afternoon tea which could cater for both children as well as the adults. Our last afternoon tea in London was over 16 years ago when I qualified as an accountant and treated the family to tea at the Ritz, all whilst pregnant with G. It was an amazing occasion and I really wanted to find somewhere to meet our expectations and previous experience if at all possible.

I spent weeks searching the internet and reading reviews before finally settling on the Charlie and the Chocolate Factory afternoon tea offered at One Aldwych. I already knew a little about One Aldwych as Executive Chef Dominic Teague won the inaugural Pathfinder Award at the FreeFrom Eating Out Awards in 2016 and I had read all about the work he had done to create a completely gluten- and dairy-free restaurant without advertising the fact.

Our experience started with my initial contact with the hotel to see if they could cater for both G and M without too many problems. There then followed a flurry of emails between us to establish what safe foods could be prepared, keeping it relatively simple to suit G’s tastes and without pushing M’s boundaries too far. I asked for his meal to be MEWS-free and was impressed when they sent through to me a copy menu for what they thought they could make for both children. With a few tweaks here and there, we ended up with what looked to be an impressive selection of savoury and sweet treats, guaranteed to make this afternoon tea a truly special one for us all.

With one week left to go, there was just enough time to exchange one last email before we headed to London and I was able to order a MEWS-free celebration cake to mark the triple occasion – Mum’s 70th, G’s 16th and our 20th wedding anniversary – all in one fell swoop. I had also received a reassuring email from Executive Chef, Dominic Teague himself, explaining just how they would look after our table and take care to make sure the cross-contamination risks were reduced to as low as they possibly could be. Other than making sure that we had enough medicines with us to ensure that M was well-covered for the extra treats I knew he’d be trying, there was nothing more we could do until we arrived at One Aldwych itself.

On arrival, we were ushered upstairs to the beautiful dining space of One Indigo and quickly seated at our table. My one criticism of our afternoon is that service seemed to take a long time from beginning to end and we had been sitting at our table for a good 5 minutes before the restaurant manager appeared to introduce himself and tell us about what food we could expect to be served. However, everything settled, we then sat back to wait for our food to appear – and that was definitely worth the wait.

My one hesitation had been around the savoury items going to be served for G as she is not the most adventurous when it comes to food and although I had originally asked if she could have just plain GF/DF ham sandwiches, the final menu I had seen suggested that she would be given more than that. A little prompting ahead of time meant I’d agreed with her that she would try at least a mouthful of everything she was served, so you can imagine all our delight when a plate of safe ham sandwiches appeared for her as well as an allergy-friendly carrot puree and houmous tart, all of which she enjoyed with an enthusiasm just about matched by M as he enjoyed an incredible array of unexpectedly safe foods.

The pièce de résistance was, without question, the marvellous dessert selection that arrived for each of us. Cakes, scones, mousse and fruit kebabs made for a truly spectacular display and the selection provided for M was just as impressive as those for the rest of the table. The chocolate and raspberry celebration cake was wonderfully light, airy and delicious, though totally unnecessary given the amount of food we had to enjoy for the meal. My Mum, Mike and I were all delighted to be able to treat both children in such a way and one that we would never have thought was possible 4 or 5 years ago. My thanks go to Dominic Teague and his team at One Aldwych for giving us such a wonderful birthday meal – and for the boxes of leftovers we were able to take to enjoy at home later too!

A Sunday in London

After our late night at the Royal Opera House, you couldn’t have blamed us if we’d enjoyed a lie-in the following morning; however, always something of a glutton for punishment, I decided that we needed some exercise before we headed to the second part of my Mum’s birthday treat, the Charlie & the Chocolate Factory Afternoon Tea at One Aldwych, and so we set off from the hotel by about 9.15am. Suitcases packed and left at the hotel for pick-up before our train home, we set off along the South Bank towards Westminster bearing little more than handbags and the requisite medications needed for our meal.

It was an extremely foggy Sunday morning and whilst it wasn’t quite thick enough to classify as a traditional “pea-souper”, we could barely see to the middle of the murky Thames, something neither child had experienced on previous visits to London. We meandered past the Globe and had a quick look to see what productions are coming up as both G and M are keen to return to watch an outdoor Shakespeare play as soon as we reasonably can. It’s been a long time since any of us have walked the length of the South Bank and it was interesting to take note of the various developments that have happened in the meantime. As soon as we reached the London Eye, it was time to turn right across Westminster bridge, past the still scaffolding-clad Elizabeth Tower, home to Big Ben, and into Parliament Square to look at the parlimentarian statutes that can be found there.

As the only ones to have eaten breakfast at this point were M and G, our next decision was to head to Trafalgar Square and the wonderful Cafe in the Crypt at St-Martin-in-the-Fields for a small meal to tide us over until our Afternoon tea for lunch. Our journey took us past the Cenotaph, which still had the poppy wreaths from the Remembrance Day service displayed and we took 10 minutes or so to look at all the different wreaths we could see. Unfortunately, when we eventually reached the Crypt cafe it wasn’t yet open and so instead we decided to try out the recently refurbished cafe in the National Gallery.

Our experience at the National Gallery cafe was very much a mixed affair. On one hand they stocked both soya and coconut milk, which meant that both G and M could have a hot chocolate, something that was very much needed on that cold November morning. However, there were no allergy options for breakfast items or cakes and instead the children were left munching on some plain crisps and a couple of snacks I had tucked into my bag. Given we were ultimately en route to our afternoon tea, it didn’t matter too much on this occasion, but it would have been a much bigger problem on any other visit.

Once our appetites were satisfied enough to see us through to lunch, we had just enough time to browse the Christmas market in Trafalgar Square. The children enjoyed having a wander to see what was there and we came away with a new pair of gloves and a set of small hand-warming pads for M. Despite browsing several stalls, G was left disappointed that she still hasn’t been able to find a ring that’s a perfect fit for her fingers, but we will continue the search whenever and wherever possible. Finally it was time to head on to One Aldwych and the treat we were all hoping their Afternoon tea would prove to be.

A Night of SeriousFun

It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.

Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”

And this made me think.

It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.

I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.

The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.

It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.

This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.

Fishy Fridays

Like so many, I was brought up in a time when the tradition of eating fish on Fridays was prevalent, but the increasing restrictions on M’s diet over the last few  years have meant that it was something we didn’t really continue as a family as M couldn’t share in that meal. Add in the challenge of cooking something substantial quickly enough to meet G and M’s increased appetites after 3 hours at Stagecoach on a Friday evening, and I frequently found myself opting for something frozen I could pop in the oven before we picked them up. I often chose allergy-friendly fish-fingers for G, so there was at least a nod to my upbringing on occasion.

M loved fish and seafood before his diagnosis and so getting them back into his diet if at all possible was always an ambition of ours. I remember both G and M tucking into plates of just about every seafood you can imagine when they were small, with M declaring that the only one he absolutely didn’t enjoy was the oyster! G is a little less adventurous these days, though she still loves calamari if it’s ever on offer. We have attempted a few different fish since he was tube-fed, but it is only really in the last 18 months or so that we have been able to find a small but tasty selection that he can tolerate on a reasonably regular basis.

Tuna and prawns now appear on the menu every couple of weeks, but there really is only so many ways that you can prepare these to create any variety in serving options. With M being keen to increase his repertoire of meals, just imagine my delight when I discovered at our local supermarket a safe version of one of my all-time favourite pub dishes, scampi, for G and M to try at home. Whitby Wholetail Scampi is amazingly gluten-, dairy-, egg- and soya-free and the breadcrumb coating is predominantly rice flour, which ticks so many boxes for us. We were pleasantly surprised by the portion size of a box – just the right amount to feed my two – and the texture and taste of the crumb is excellent. This scampi has been a big success in the house and makes for a delicious, quick and traditional dinner for any Friday night!