Author Archives: bluesingingdragon

About bluesingingdragon

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

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.

Keep Calm and Curry On!

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

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.

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!

Bluestone Photo round-up September 2019

A great weekend celebrating a milestone birthday with family. Food, fun and fantastic weather – what more could we ask of South Wales in September?

A quiet birthday

No sooner have we just about stopped celebrating my Mum’s 70th birthday (there are a couple  more presents to enjoy over the next few weeks), but it’s time for Mike’s birthday – and on a Tuesday of all days. Tuesday has to been one of the worst days to celebrate a birthday in our household – M has his dyslexia lesson after school, G has an hour’s tutoring to prep her for her GCSEs and we head to our local swimming pool for our half hour session between 8.30 and 9pm; and it’s pretty much non-stop until bed.

So, instead of even attempting a meal out or raucous party night, we had a rather low-key celebration over the weekend with a scrumptious buffet-style spread and bottle of wine for the adults in front of Strictly on Saturday and marked the occasion that way.

Happy birthday Mike – we love you very much xxx

Eating Out with Allergies at the Bluestone Resort, Wales

Our stay at Bluestone ticked the boxes in so many ways, not least because it gave us access to a great kitchen which meant we could eat breakfast and lunch safely “at home” and still have the opportunity to try out a couple of the restaurants on site. I had been in touch with the resort team a few weeks before our stay and they had sent through to me a great allergy information document, which detailed each restaurant, all of the food items on their menus and showed clearly which allergens were contained in each dish. Usefully, it also indicated those dishes that could safely be made gluten-free, which made it easier for G and M to choose what they wanted to eat.

Farmhouse Bar & Grill: As we knew we’d be arriving late on the Friday night, we booked our first meal out for the Saturday evening and chose the Farmhouse Grill, which seemed to have a good selection of meal choices for even the pickiest members of our party. G opted for the baked goats’ cheese salad with blueberries, cherries and a mix of toasted nuts as well as a side of chips, which we were assured were cooked in a separate fryer to make sure they were safe. She enjoyed the meal, although learned the important lesson that it’s always worth asking for the dressing to be put on the side as the strong balsamic vinegar dressing was a little too much for her taste-buds. M decided that a gammon steak with pineapple and chips was the perfect dinner and loved every mouthful he managed, although the generous portion was a little too big even for my hungriest child. There were no safe desserts for them on the menu, but with more than enough birthday cake to eat, the puddings weren’t missed at all.

Knights Tafarn: For our Sunday lunch, albeit it a late one due to a morning spent enjoying the slides and lazy river at the Blue Lagoon Water park, I suggested the Knights Tafarn, the on-site “local” pub. We were lucky to find the restaurant fairly quiet by the time we were ready to order and it had no problem in catering for the 7 of us in good time. Having chosen something a little more unusual *for her* on Saturday night, G stuck to an old, but familiar favourite of ham, eggs and chips. Once again we were reassured that the chips were safe and she certainly enjoyed every single mouthful. M, on the other hand, decided he wanted to have a slightly lighter lunch of gluten-free ham sandwiches with a small salad and a side of chips. I say small, but afraid that it wouldn’t be enough to satisfy M’s almost insatiable appetite at the moment, Mike had actually ordered a double portion of sandwiches and so we ended up with a few leftovers. The food was good, although not remarkable, but it was simply great to be able to eat out for a Sunday lunch with our extended family.

All in all, I was impressed with the food offerings at Bluestone. We didn’t have time to try the Oaktree Italian restaurant, although I had spotted that they had GF pizzas on the menu. The small convenience shop stocked an adequate supply of freefrom foods in case needed and I was impressed to see an array of safe breads, biscuits, cakes, pasta and chocolate for sale as well as the increasingly popular vegan Magnum ice-creams. The selection was small, but good and I loved that they had a number of local suppliers available as well as the bigger name brands.

World Mental Health Day 2019

When I realised that this year’s World Mental Health Day was focusing on the subject of suicide and suicide prevention, I paused. I wasn’t sure that this was an area that I could write about knowledgeably and, in fact, even as I write this blog post now, I’ve got a constant thought in the back of my mind that it could be just as easy to press “delete” as it would be to press “publish” when I’ve reached the end of my musings.

I’ll be honest, suicide is not a tragedy that we’ve had to deal with firsthand. I know friends and colleagues whose families have been shaken to their very core because of the unexpected and sudden death of a loved one, but I can’t pretend to understand just how difficult it is to come to terms with that death, deal with the impact of it or find a way to somehow carry on with life “as normal”.

Can I understand what leads someone to believe that death is the only answer to their problems? Possibly.

I’ve never been in the position to feel that there is no other escape, but my own experiences with depression over the years due to my T1D, following the traumatic birth of M and the massive mental health impact of workplace bullying do perhaps give me a slight glimpse of how frighteningly easy it is to spiral downwards into the darkest of places and not know how to climb back out of that hole. Sadly, it’s been a truth we’ve also had to face with M in times when he has struggled to come to terms with the reality of his chronic illness and all the consequences that come with that; and we’ve watched G battle to overcome the challenges of having a sibling with health challenges. I’ve written about these experiences and how they’ve affected me, G and M many times and you can find those posts through searching “mental health” or “bullying” on my blog.

Today I saw this image posted on social media by our local NICU ward, a place I know well after the births of both G and M, and it perfectly encapsulates everything we should be teaching our young people about their own mental health: that no emotion should ever be considered to be wrong and, most importantly, that it’s okay to not feel okay.