Author Archives: bluesingingdragon

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About bluesingingdragon

Mum to an EGID son and a food allergy daughter. Full-time accountant and supporter of Over The Wall.

1999

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20 years ago the world was on the cusp of the new millennium. Fears were high about the possible fallout from Y2K and the dreaded millennium bug, and my Mum was not alone in stocking her under-the-stairs cupboard with enough dried goods and bottled water to see the family survive for months if the very worst actually happened. Films “Star Wars: Episode 1 – The Phantom Menace”, “The Sixth Sense” and “American Beauty” hit the big screen and we found ourselves singing and dancing along to “Tragedy”, “Livin’ La Vida Loca”, “Mambo No. 5” or even “Baby One More Time”. It was a time of excitement as we ventured into that new era with anticipation for everything that the 21st century might bring.

20 years ago Mike and I embarked on a new adventure that was all our own. Mike had moved almost everything he owned across continents, we had bought our first house, faced – and survived – the first big challenge of life with my T1D and, on December 18th 1999, we committed to loving each other and living together for the rest of our lives. We trusted that that commitment would bring with it much happiness, but knew that we would inevitably face challenges and sorrow too, which we would survive and could survive by being there for one another. Our vows “…for richer, for poorer; in sickness and in health…” have been tested perhaps far more than we could even imagine, but we have come through the harshest of fires and are much stronger for it.

20 years ago we celebrated our wedding surrounded by our family and friends from near and far, and even though several of those who were with us then are no longer with us, we have precious memories to remind us of their presence when we started life together. Our wedding was very much a family affair. We were married in the breath-taking beauty of our local Cathedral and were blessed to have friends from my time with the Girls’ choir there performing integral roles in the ceremony – from the Canon marrying us, to the Organist playing, the Choir providing the music and the Head Verger adding and lighting tens of tealight candles before the service to bring an extra touch of magic. Our amazing vintage car was provided and driven by the father of someone who was at school with me and a friend of my Aunt made our stunning wedding cake. Our reception venue was decorated by my bridesmaid’s mother and friends of my parents provided a Dickensian feel with their wonderful singing of popular Christmas carols before our evening reception began.

20 years on, we are not the fresh-faced youngsters we were then. Life has taken us on journeys that we never imagined would be part of our future and has, at times, battered us to the point when it would have been so much easier to just crawl under the duvet and hide, rather than face it head-on. We have weathered every storm that has come our way and somehow found a way to absolutely dance in the rain. We are stronger and braver together than we would ever have been as our separate parts – 20 years of life experienced together will do that for you.

20 years on, I am grateful for every moment we have shared. Neither of us is perfect – far from it indeed – but somehow we’ve made it work. We’ve laughed together, loved together and grieved together. We have 2 wonderful children – most of the time – and life is good.

Happy 20th anniversary Mike. Love you always and here’s to 20 more!

Snow Globe Magic

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If I’m perfectly honest, G’s 16th birthday cake is an idea that has been bubbling for a few years, ever since I first saw it shared on Facebook, but it’s taken me this long to pluck up the courage to actually give it a whirl and be organised enough to start the decorations more than 24 hours in advance of her birthday. I was very nervous about whether I’d be able to get it to work, but the end result was much better than I hoped and G was absolutely delighted with it. That was especially important given this was the girl who just a couple of weeks ago said that she didn’t really want to celebrate her birthday and wasn’t bothered about having a cake!

To start with, I found a brilliant new recipe for a gluten-free, vegan sponge cake on The Loopy Whisk and, with a few tweaks to make it just as G finally decided she wanted – a vanilla and chocolate chip cake – and ended up with a wonderfully light and delicious birthday cake for her. I also whipped up a batch of cupcakes for my choir’s Christmas meet-up from the same batter and despite a few issues around getting the timing of that bake right, I was thrilled with those as well.

Next it was on to the most challenging step of all – to create a “snow globe” to encase the top of G’s cake to make it a truly magical masterpiece. The instructions on how to make the globe from high quality melted glycerine can be found here as well as my “step-by-step” photos you can see here. I attempted a larger globe than for individual cupcakes, which was successful, but much trickier to coat the balloon than the instructions suggest. Also, a word to the wise, don’t use balloons that have writing/images printed on them – the only balloons I had tucked away at home were Over The Wall ones and so G’s snow globe had an unexpected additional image, which delighted her, but wasn’t quite what I was aiming for!

I kept the design on top of the cake quite simple and attempted a new buttercream icing using goats’ butter as that’s something she can tolerate without a problem and that M can have a little of as a treat. I always find it difficult to make a dairy-free icing that is stiff enough to pipe successfully, but this batch was better than ones I’ve created before and I think it will need to be a case of continued trial and error until I find that perfect recipe. So, with a layer of desiccated coconut snow, a simply piped Christmas tree and the requisite “16” candles, G’s birthday cake was complete for another year. And this year I was only up to 1.30am finishing it off!

Sweet Sixteen

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We did, of course, always know that this day would come, but even so, how is it that my eldest baby turns 16 today?

When I look back at the first 16 years of her life, they have not been as easy as any of us imagined or would have wished for when we first held her in our arms. I don’t think our wishes at that moment in time were for anything more than a healthy baby and a happy childhood filled with rich experiences and every opportunity we could offer her. We were determined to encourage that newborn to try her hand at anything she wanted and to reach for her dreams with a belief that she could achieve them.

It’s no surprise that life got somewhat in the way of those plans, what with the advent of her own unexpected health challenges, let alone the more demanding ones of her baby brother, and yet we continue to tell her to shoot for the stars in whatever she does. Fear and anxiety have plagued her over the last couple of years, and yet she keeps going, hopefully knowing that Mike and I have her back and will be there to not only support her, but to walk every step of her journey with her as well as pick her up and carry her if she needs us to.

To say we’re proud of G would be an understatement. Our funny, generous, gorgeous girlie may be able to throw the monster of all teenage tantrums at times – her 2 year old self had nothing on her now – but she has an incredibly gentle and beautiful spirit. She may find the stress of exams overwhelming, but she perseveres with her studies and loves nothing more than curling up with a good book or listening to music in her downtime. Her passion to dance is inspiring and she finds a true release through her movements that you can see reflected in the joy that crosses her face every time she performs, be that on stage or in the safety of her own bedroom.

As I sit here tonight, what do I wish for the next 16 years and beyond? I wish her health and happiness and a future that’s filled with dreams, just as we did when she was born. I wish her friends as well as family that will love her and support her, no matter what, and a home that’s filled with love, even when tears and anxieties overwhelm. I wish her a career that’s fulfilling and satisfying, even though she has no idea what she wants to do as yet. Most of all, I wish her every confidence to be her; to be true to who she is and to always be able to stand up for herself and for others.

Sweet 16th birthday sweetheart, we all love you very much xxx

A Sunday in London

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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 at the Opera

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It’s a big year of milestones in our family this year, with my Mum’s 70th and G’s 16th birthdays as well as our 20th wedding anniversary. You may remember that in September we spent a family weekend at the Bluestone resort in Wales for my Mum’s birthday, but her celebrations haven’t stopped there and last weekend we headed to London for a weekend of stylish fun. The main reason for the trip was to fill a long-held ambition of my Mum’s, to go to the Royal Opera House in Covent Garden. As the only members of the family lucky enough to have been there before are M and me, thanks to his 2 lengthy December admissions at GOSH, I wanted to find something to see that I thought we all would enjoy and, spotting the performance of “Sleeping Beauty” by the Royal Ballet in their calendar, knew that this was the winning choice.

Our weekend started with the train journey to London and then across London to our hotel near Borough Market. We had agreed on an early dinner to give us plenty of time to get to the Royal Opera House, so after a short walk from the hotel to St Paul’s Cathedral and back for Mike, M and me, we dressed in our finest and headed across the road to the nearby Wagamama restaurant for what we knew would be an easy and safe dinner for both G and M. From there, it was a case of hailing a black cab to whisk us to Covent Garden and we found ourselves there with plenty of time to soak up the atmosphere of this incredible building before the performance started.

For anyone wondering what to wear to the ROH, the rule really is anything goes, just as their website suggests. From jeans to evening dresses and just about everything in-between, we spotted our fellow theatre-goers wearing it all. We had opted to dress up with G remarkably, and not too reluctantly, in a black skater-style lace dress, whilst M was suited and booted in a burgundy shirt, grey tie and black waistcoat. My Mum and I had talked beforehand about what to wear and both regretted not having dressed up just a little more. Mike had told me to take one of my long dresses to wear, but I chickened out at the last moment taking a knee-length dress instead and really wish I hadn’t. Similarly, Mum had opted for smart trousers, heels and a long top, but wished she had brought a dress. Obviously, we’ve reached the sensible conclusion that we will just have to go again and wear our finest!

Coats safely deposited in the cloakroom, we wandered about the gorgeous Christmas tree to spend some time in the bar area on the first floor, sipping our glasses of champagne and people-watching before finding our seats in the side stalls. I wasn’t sure how good the view from our seats would be, but I needn’t have worried as we had a great view of the stage and only missed a few bits happening on the very side of it at times. I was also nervous about whether the children, especially M, would survive the lengthy performance – 3 hours including 2 20 minutes intervals – but again, I didn’t need to. Both children were enthralled, even if M did drift off a little towards the end and they were excited to spot different dance steps that they have been learning in their own dance classes. The performance was absolutely incredible and the whole family enjoyed our night at the opera.

A Night of SeriousFun

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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.

Keep Calm and Curry On!

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There’s nothing better when visiting a new place than finding a local market to explore and uncover any treasures hidden amongst the stalls. Manchester proved to be no exception and we were tempted by the vast array of produce, handcrafted gifts and other knick-knacks on offer. G was drawn to the trays of sparkling jewellery, whilst M investigated the various food items to see if anything was M-friendly and worth considering. He was delighted with the fresh fruits on offer as well as the multiple flavours of Turkish Delight that seemed to be calling his name, whilst G was drawn to the jewellery stalls, particularly the rings. We found a variety of small items to pick up for future occasions, well Christmas is fast-approaching after all, but the out-and-out winner for the day has to be the amazing “Curry On Cooking” Korma curry kit

Company founder, Veena Josh was on hand on the market stall and more than willing to spend some time chatting to me about their curry kits, which are fantastically top-14 free and definitely worth a try at home with the children. G isn’t the biggest fan of curry, but M loves Indian food and I was hoping that this would give him a more authentic taste than the concoction I usually manage to scrabble together for dinner from whatever spices are lurking in the back of my cupboard. Veena shared with me that not only does each pack include a recipe on the packaging, but also either she or her sister try making their curries using a variety of milk alternatives to check that the curry can be prepared to be as allergy-friendly – and delicious – as you want and need it to be.

Having bought a kit and brought it home with us after the indoor sky-diving adventures, it was a case of waiting for the perfect opportunity to give the recipe a whirl and just a couple of weeks later, we decided on a curry for our Saturday night family dinner. M read through the ingredients listed on the inside of the pack, made a note of anything we needed to buy to make it and then helped prep and cook the meal itself. A delicious meal was prepared and served to our discerning family audience. M, Mike and I all very much enjoyed the flavours of the curry and whilst G was far more reluctant to give it a glowing review, she did manage to finish her plate,eventually!

The curry kit has since been used to make another dinner for the children as well as a handy safe alternative to the biryani spices needed for M to cook with at school. We will definitely be trying out some of the other curry kits available and seeing just how far we can push that spiciness factor!

Mini Adventures for October half-term

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Last week was October half-term for us and, after an almost painfully long term, it was definitely needed by us all. Our plans meant that both Mike and I took the week off work to spend on some mini adventures from home as well as finding the time to complete the inevitable bits of homework that G and M had been set for the week.

And what a week it was:

Monday: Homework squeezed in around orthodontist appointments and blood donations amongst other less-than-interesting things.

Tuesday: A lazy morning in before heading off for a 15-mile bike ride along a local cycle path. We had great weather for it and even took a packed lunch to enjoy on our way. What better way to round off our day, but an evening glued to the Great British Bake Off final and, thank goodness, complete consensus on the final winner!

Wednesday: An early start to drop Mike’s car off for its service before we headed to Hampton Court Palace. This was the first visit for Mike and the kids, who enjoyed the House, the gardens and the Maze, despite their initial reluctance for a visit to “yet another” place to keep Mum happy. We stayed overnight at a nearby Premier Inn, but had a very disappointing dinner at the attached Beefeater restaurant – somewhere I definitely wouldn’t recommend to anyone visiting with allergies.

Thursday: A mixed day today. Halloween is always difficult for me because it’s the anniversary of losing my Dad, but our plans for a fun-packed day at Chessington World of Adventures helped make it a better day than it might otherwise have been. It was surprisingly quiet at the park considering we were in the middle of half-term and the extra hours at the end of the day meant G and M could revisit some of their favourite rides several times as the dusk crept in. We were very impressed with the allergy information available and enjoyed a pizza dinner, with specially-prepared gluten- and dairy-free pizzas for the children. Definitely somewhere we’ll look to visit again.

Friday: Back home for a quieter day, which was just as well given the torrential rain that hit us hard. It was very much a day for curling up in front of the favourite and enjoying some TV before the weekly Stagecoach run for G and M.

It was a lovely week, filled with a little bit of everything – although possibly not quite enough sleep to see us through the next 7 weeks of term until Christmas.