A summer like no other, but still filled to bursting with sunshine, laughter and huge amounts of safe ice-cream!
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.
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.
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 Cafe: this 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.
I don’t think it’s possible to visit New York without experiencing something of its nightlife and we had 3 very different nights out during our stay.
Ice Hockey at the Prudential Center, New Jersey: Unsurprisingly, the first was an evening of ice hockey and the first time either G or M have been to a proper NHL game. As soon as our flights and hotel were booked, Mike was on the lookout for who would be playing where over the Christmas period and as soon as the final schedule was released, big decisions had to be made. We were originally considering a New York Rangers game at Madison Square Garden, but the cost of the seats combined with what we considered to be limited viewing based on our previous visit to see the New York Knicks meant that it looked unlikely we would go.
In a moment of almost sheer desperation, Mike decided to widen his search to see whether the New Jersey Devils were playing at home during our visit and there he struck proverbial gold. Not only were they playing on the 27th, but much to Mike’s delight, they were up against his team, the Toronto Maple Leafs. Even though we were crossing state lines, the trip to the Prudential Center in Newark by PATH train was easy and took us almost directly to the door. The children cheered their way through their first hockey game with G wearing proudly the NJ Devils hoodie she bought beforehand, mostly in a bid to rile Mike. It was a great family evening out for all of us with G and M now fully indoctrinated into the love of the sport and the right final result being achieved on the night, if you are to believe Mike and M!
Rockettes Christmas Spectacular, Radio City Hall: This is an experience like no other and one that I would heartily recommend time and time again. It was also the reason behind my Mum’s wish to be in New York during the Christmas period for her 70th birthday. For the uninitiated, the Rockettes are a dance troupe started in 1925 in St Louis, inspired by the British Tiller Girls of the same era. They are known for their iconic and incredible dance line and the impressive precision and impeccable timing of their dance routines. To watch 36 dancers perform routine after routine in absolute sync with each other is simply breathtaking and both G and M were totally absorbed from the moment the music started.
Their Christmas Spectacular is, quite simply, that. Spectacular; and utterly awe-inspiring in just how spectacular it is. Radio City Hall is an amazing venue and one that I would happily visit again and I would love to do a backstage tour there if the opportunity should come up in the future. There were some wonderful surprises in store as we watched, the most outrageous of which I won’t share, just in case you are ever lucky enough to visit yourself. Let me just say, that the nativity scenes were not quite what we had expected and definitely worth a watch! M loved the Santa Claus routine, whilst G was hard-pressed to pick her favourite, so amazed was she by their skills and dance moves.
Movie night at AMC Empire 25, 42nd Street: Christmas for the last few years has meant one thing when it comes to films and that has been our family visit to see the latest in the Star Wars saga. 2019 was no different and given the epic nature of this final film, it only seemed fitting to watch “The Rise of Skywalker” somewhere amazing and different. Our unplanned evening out did not disappoint and we lapped up the opulent luxury of the AMC Empire 25 on 42nd Street, just opposite our hotel. We are not a family who splashes out on the VIP seating in our local cinema, but even we know that that has nothing compared to our seats at this NYC cinema, which had the functionality to make them recline and to raise a foot rest so that we were truly comfortable for the duration of the film.
Our last foreign movie night out was during our last trip to Canada, when we went to see “Avengers: Infinity War” at a wonderfully old-school cinema in downtown Toronto. The experience was just as magical, but so very different in just about every way imaginable. It was a fitting end to our busy few days in NYC and we left the cinema with 2 very happy youngsters.
When Mike and I visited New York nearly 3 years ago, we stayed in the fantastic Hotel Beacon on the Upper West Side just a couple of blocks from Central Park. We loved the location and the facilities and always thought that it could be a contender for if and when we ever visited with the children in tow. However, Mum was keen to stay closer to Times Square and so this trip saw us at the Westin Times Square instead. A great hotel on West 43rd street with the most amazing views from our 44th floor bedroom, but disappointing offerings when it came to allergy-friendly food. Fortunately, if there’s one thing you’re not short of in NYC, it’s restaurants and we found several within walking distance that were more than able to cater well for both G and M.
Our visit was planned to the nth-degree. With no input from the children except some less-than-subtle questioning about what they might like to see after G’s best friend visited NYC last summer, Mike and I had put together an itinerary that we thought would cover most of the must-sees in the city and it definitely kept us busy whilst we were there. My Mum has visited NYC a few times before and so didn’t necessarily want to do as much trekking around as we knew we would end up doing with G and M. I think we managed a good balance of the main highlights, leaving both us and the children enough to still see if we ever come back again and even managed to throw in some extra activities that we hadn’t done before.
The children were less than impressed with Mike’s yearning to see the inside of the Guggenheim museum on our first afternoon, especially after our lengthy wander across Central Park. I insisted that we took in both the Alice in Wonderland sculpture and the “Imagine” mosaic as we walked through and I think tiredness after our extremely early start was really kicking in by the time we made it to the Guggenheim. I only wish I’d been able to snap a photo of G’s face when I told her that we weren’t going round the museum exhibits, but simply going to stand in the main entrance whilst Mike looked up in awe and took several photos. She really was lost for words for a few minutes, though she quickly found her voice to comment on our 2 minute stop for a long time afterwards!
The Statue of Liberty, Empire State Building, 9/11 Memorial Museum, One World Observatory, Grand Central Station and the New York Library for M to see Winnie-the-Pooh, we “did” them all. We usually choose to take a sightseeing bus to do a city tour when we visit anywhere new, but, given the busy traffic in NYC, instead thousands of steps were walked each day and we ventured onto the subway whenever time and location required. Our days were absolutely jam-packed, but we managed to do everything we wanted without too much hassle. Our fears about the winter weather didn’t come to pass and we definitely didn’t need the oodles of thermal underwear I’d had packed “just in case”.
This has been a big year for the 7Y2D household. Mum’s 70th, G’s 16th, my Aunt’s 65th and our 20th wedding anniversary have kept us busy over the last few months and the celebrations have been nearly endless since the middle of September, especially for my Mum. However, there was one more surprise to come for the children, which started with a wish from Mum, was then planned meticulously for almost a year and finally revealed to G and M on Christmas morning.
With the help of some carefully thought out and themed pressies and well-crafted clues as well as the odd stocking-stuffer here and there and my Mum’s Christmas tree that was decorated with predominantly NYC baubles, an incredulous G and excitable M eventually discovered that we were off for the surprise trip of a lifetime and heading to New York. Neither had an inkling it was even on the cards as they hadn’t questioned our decision to cook and eat our Christmas dinner on Christmas Eve – something that worked surprisingly well at reducing stress levels on Christmas morning itself and definitely something I’d want to consider doing again – or worried that the stack of pressies under the tree for them was considerably smaller than normal.
The plan was simple, though had taken hours of subterfuge to achieve. I spent most of December “checking and washing” the pile of winter and ski clothes stored in the attic to see what still fitted us all, something M eventually twigged was all due to our planned trip as we headed to Heathrow. I had slowly, but steadily removed items of warmer clothing from their wardrobes and drawers to take to New York and had, in fact, packed 3 sets of bags by the time December 22 was with us. 3 suitcases and 2 pieces of hand luggage for the flight as well as a small overnight bag were deposited at my Mum’s house one evening by Mike without the children realising and our boxes of Christmas pressies, food and bag of clothes strategically left in the hall and landing at home as evidence of what I’d been sorting out behind our closed bedroom door for hours.
On Christmas Day itself, once the presents had been opened, the secret revealed, questions answered and additional bits and pieces needed for our holiday sorted from the rest of the Christmas detritus, there was just enough time to share a family buffet-style spread, more in keeping with our Boxing Day meal than anything else. Mike, G, M and I set off from South Wales in the early afternoon, detoured via my Mum’s house to swap the Christmas packing for the holiday suitcases and eventually arrived at our hotel in Heathrow in the evening. We had little time to enjoy their beautiful Christmas decorations as we were more focused on packing the final items and getting an early night.
Our flight was at 9am on Boxing Day, so we had an early start (3.30am!) to reach the airport terminal and get ourselves checked in before heading to Heathrow’s T3 lounge to relax in peace before the flight itself. One of G’s Christmas pressies was a manicure before we flew, so she had just enough time to enjoy a GF/DF bacon sandwich and a bowl of cereal before hitting the lounge spa to have her nails done. G absolutely loves painting her nails, but this was her first manicure and she enjoyed being able to choose her colour – a pale mint green – though she wasn’t quite so certain about the soak and massage bit of it. And finally, after an extremely busy few times, it was time to board our plane and fly out to 5 days of adventure in NYC!
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!
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.