Author Archives: bluesingingdragon

About bluesingingdragon

Mum to an EGID son and a food allergy daughter. Full-time accountant and newsletter editor for charity

Birthday blessings

This weekend has been one of “those” weekends. You know, one of the ones where there’s so much to do and just not quite enough time to manage to do it all. A combination of birthday celebrations, performing arts classes, auditions and hospital appointments has left us feeling somewhat exhausted; but tonight, after a fun few hours with M, G and a group of their friends, I’m also counting our blessings.

It’s been no secret that M found last year, his first at secondary school, tough. The move into a school environment where his year group was considerably bigger than his entire junior school combined with family deaths and the inevitable challenge of his continued restricted diet left not only M, but all of us, struggling to find a positive way forward. Circumstances last year meant that we didn’t really do much to celebrate his 12th birthday, so I was determined to kick off his teen years in whatever fashion he wanted.

The celebrations started with an M-friendly pear and ginger cake with caramel buttercream icing on Friday evening to accompany his presents, which included the bass guitar and amp that he’s been yearning after for a few months. He had been slightly frustrated with Mike’s refusal to take him to look at guitars last weekend and was only marginally mollified by the promise to get up early this Saturday morning to visit our local guitar shop and examine exactly what was on offer. As you can imagine, his excitement in finding the guitar and its own mini amp waiting for him when he got home from Stagecoach was wonderful to see and we’ve been serenaded with renditions of both “Bohemian Rhapsody” and “Seven Nation Army” since late Friday night! I’m just glad the bass guitar lessons he’s been having at school appear to be paying off already and delighted to see him so wiling to practise in every spare moment.

However, the culmination of M’s birthday weekend came yesterday afternoon as we spent the late afternoon and early evening with a group of his and G’s friends. M had chosen a group of old friends and new, some from school, others that he’s grown up with and the best bit was seeing just how well these different strands of his life hit it off and enjoyed the few hours together. After lots of chat, M had decided he wanted to try his hand at an escape room and we booked 2 rooms at one of our local escape rooms sites. We amicably split into 2 teams, each with an adult and a mix of the older and younger children and determined to compete against the clock, rather than each other to escape our locked rooms.

I was impressed with how well they all worked together and certainly those on my team managed the frustration of solving some of the clues well, with only one of M’s friends needing some redirection and reminders to focus from time to time. We were lucky to escape with just 2 minutes to spare and although Mike and M’s team were not quite so successful – they had found all 4 keys, but failed to open the door in time – everyone enjoyed themselves and were ready to move on for a dinner to suit all dietary needs that were present.

The chatter, camaraderie and chuckles around the table were wonderful to experience and all the children were a delight to spend time with as they enjoyed their food and just spending time together. It was a wonderful way to celebrate M’s 13th birthday and I really have counted my blessings tonight that M has finally found his way out from the darkness of last year with the help of some amazing friends, who accept him for who he is and don’t see his health challenges as a barrier to their friendship with him. A perfect celebration with both new friends and old; and a combination of friendships that I hope will keep going for many years to come.

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Two Teens…

It may sound a bit like a “Two Ronnies” joke – 4 candles anyone? – but actually it simply means than today Master M joins the ranks of the teenage tribe and is celebrating his 13th birthday.

Those 13 years haven’t always been the easiest and there have been times when we didn’t know if he’d even get there, but despite his dramatic early arrival into our world, here he is: cheeky, courageous, generous and strong (strong-willed, strong-minded as well as strong in spirit!).

Happy 13th dude – we love you always!

Be my Valentine…and #SpareARose

How did your day start today? With a card, chocolates or maybe a bunch of flowers? A promise for dinner tonight? Or maybe tonight will just be a quiet night in front of the TV.

You can’t have missed that it’s Valentine’s Day today and you may, or may not, be celebrating it.

Whatever your plans, could you please do just one more thing?

By gifting the price of one single rose (£4) to Life for a Child, you will be helping the Diabetes community to “take care of one another around the world” and giving one month’s supply of life-saving insulin to child living with T1D in an under-resourced country.

It really is that easy and what a wonderful gift to share with your loved one this year.

Happy Valentine’s Day!

#FFFA19

It seems almost impossible that a year has passed since my last journey to London for a judging stint at the FreeFrom Food Awards (#FFFA19), and yet, here I am, on the train heading home after another great day of finding some fab free from foods. I feel so privileged to be a part of the judging team and it really is no exaggeration to say that it is easily one of the highlights of my year. Not only do I get to taste and discover some fantastic new products to the market, obviously always feeling very hopeful that I might even find some that are M-friendly as well as delicious, but I have made some lovely friends along the way and the judging sessions are always the best opportunity to do some much-needed catching up over food and a cup of tea.

My day started with “Foods to Go”, which Mike and I judged on the one occasion I let him join me for the experience and which nicely balanced out the sweetness that I knew the afternoon would be filled with. You never quite know what you’re going to get in this category and this year was no different as the first few mouthfuls included dried fruit snacks, soup, noodles, sandwiches and sweet rice cakes! It was a relatively small category for us to make our way through thing – just 16 items to try – which is always a good thing and I was one of the lucky few able to try everything being neither gluten-free or vegetarian.

My highlights of this session were:

Thai Carrot & Sweet Potato Soup: This was a surprise hit for me. I am not usually a big fan of carrot soup as I find it inevitably sweet, but the delicate balance of the Thai spices alongside the vegetables gave every mouthful a tantalising delicious and fragrant flavour. I haven’t spotted this soup on the supermarket shelf before – though to be perfectly honest, I’d probably have passed it by anyway – but I will definitely be looking out for it in the future.

Made Without Wheat Chicken & Bacon Sandwich: Apologies for my failure to get a photo of this, but this was a delicious, well-filled chicken and bacon mayo sandwich, which was not only gluten-free, but also dairy-free and I know will be a definite winner with G. I was impressed by the quantity of the filling as well as the flavour and texture of the bread – you really wouldn’t be able to tell it was gluten-free if you didn’t know. Sandwiches can be one of the hardest things to find when we’re out and about, so this will no doubt become a firm favourite in our family.

Caramel Rice Cakes: These weren’t necessarily the biggest hit in the room due to their to-be-expected sweetness, but I fell in love with them as they’re pretty much safe for M and will give him a great sweet treat that can be added occasionally added to his lunch-box.

This year saw my return to one of my favourite categories, that of Tea-time treats, not least because it was there in 2016 I first discovered the incredible Borough 22, who perfected the most indescribably delicious doughnuts that are safe for both children and are still a regular favourite in our household. I had gone with strict instructions from M to see if I could find anything that might be safe for him, and with a few more ingredients to play with I was hopeful that I might just have some luck. The afternoon session did not disappoint and with 5 different chocolate cakes to taste amongst the 29 products, it was a tough job, but someone had to do it.

My highlights?:

Gluten-, dairy- and nut-free Occasion cake: First of all, we were completely blown away by the appearance of this incredible wedding cake which had been carefully driven to the FFFA HQ for our enjoyment; and then the taste simply took my breath away. Amazing sponge, creamy buttercream without being too sickly sweet and enough sharpness in the jam to cut through the sweetness – utter perfection and one I would definitely recommend.

Tea-cakes: Nothing beats a toasted tea-cake and a cup of tea and it was wonderful to find this vegan and gluten-free alternative for this Sunday tea favourite. Another one of those “I don’t think you’d know it’s free from” treats we got to try and one I’m definitely going to be trying out with G.

Raw Mince Pie: Now, this will be a surprising highlight to just about anyone who knows me as they know that I absolutely hate most things with dried fruit – fruit cake, Christmas pudding or mince pies are not anything I would willingly put near my mouth on your average day. But, this was not your average day and I absolutely had to try a small bit for the sake of fair judging. It was surprisingly tasty and whilst I’ll confess that I wouldn’t necessarily rush out to buy these for myself, I would highly recommend them to anyone looking for an allergy-friendly, vegan Christmas treat.

My thanks go to Michelle, Cressida and Sue for their hospitality today and to all those producers who keep working hard to produce these delicious free from foods that give those living with food allergies, just like G and M, the opportunity to eat the same things as the friends and family safely. Keep an eye out for the shortlist in February and final winners, who will be announced on March 20th.

Young Carers Awareness Day 2019

Today is Young Carers Awareness Day 2019 and the purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs. Young Carers often struggle with mental health problems of their own due to the strains they can find themselves under, hence the launch of their #CareForMeToo campaign.

I was recently invited to write a blog for Over The Wall about the impact of their camps on our family and I chose to particularly focus on the importance of the siblings camps for children like G, who is recognised as a Young Carer locally. I thought I’d take the opportunity to share my thoughts here too.

 “…when one person in the family has a chronic illness, the whole family has it…”

Jamie-Lynn Sigler

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself.

For the last 8 years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines.

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye.

She is, without a shadow of a doubt, the unsung hero in our family story.

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.

From the interruption of frequent hospital appointments to badly timed admissions over her birthday 2 years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall Siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too.

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.

Battle of the Birthday cakes

December is always a busy month for our family, what with birthdays, anniversaries and Christmas to celebrate and squeeze in alongside the end of term and all the added demands that that almost always inevitably brings. As well as the last-minute rush to make sure cards have been written (and sent) and that presents have been bought (and wrapped), I also have to make sure I have time to bake the perfect cake to help us celebrate G’s birthday in style.

Over the years I have tried my hand at all sorts of cakes and I love spending the time to let my creative side really come out, though Mike might disagree as some of my more complicated masterpieces have kept us up into the early hours as I strive to get every detail just right. Last year I attempted a gluten- and dairy-free red velvet cake for G, which tasted great, but didn’t look as appealing as I’d have liked and so this year I was determined to create her a special treat that looked and tasted the part. G is a definite chocolate lover, something that can be a little tricky when you’re dairy-free, but there are lots of great dairy-free options available and I was determined to use a mix of them to make G a cake that the whole family, including M, could enjoy.

The obvious starting point was the beautiful chocolate mayonnaise cupcakes that I had perfected for Mike’s birthday and which I knew I could turn into a fantastic 2 layer cake. I wanted to create a really sumptuous filling and to my delight discovered this salted caramel flavoured icing mix as I wandered around our local supermarket. Mixed with our regular dairy-free spread, this made the perfect buttercream filling and topping for G’s cake. I finished it off with handfuls of Freedom mallows, shavings of Moo-free chocolate and sprinkles of Sainsbury’s Free From White chocolate chips. The final cake was a huge success: gooey, delicious and everything my chocolate-lover could have wanted for her 15th birthday.

Once G’s birthday celebrations finally came to an end, I was then on to my next birthday cake project, which was to bake a cake for my Aunt for her birthday on December 23. This year was her first celebrating without my Uncle, who sadly passed away earlier in 2018 and the plan was for a family gathering at my Mum’s house to mark the day. Mum was keen for me to bake some more of the chocolate cake that I had made for G’s birthday, but I wanted to do something a little different, especially with Christmas right around the corner, and instead settled on one of M’s firm favourites, banana bread.

When it came to making the cake, G was a huge help and offered to bake a dozen cupcakes, whilst I decided how to decorate them. She did a great job and by the time I’d found the perfect design and all the necessary ingredients, there were 12 wonderful looking cupcakes waiting and ready to go. I took inspiration from the front cover of a fantastic cupcakes cookery book that I’ve used before and gave a nod to my Welsh heritage with a plateful of sheep cupcakes. Safe buttercream icing, a small supply of Freedom mallows, safe cocoa powder and a little fondant icing was all that was needed to create these fun birthday treats,which were not only enjoyed on the 23rd, but saw G and M through Christmas too.

Thai-time

Back in 2017, we were invited to visit and judge the wonderful Bangkok Canteen in Gloucester as part of the FreeFrom Eating Out Awards (FFEOA) and it won a well-deserved gold award for its amazing gluten-free Thai food. However, what with one thing and another, I never quite got round to writing up a review of our visit despite my best intentions and so, when Michelle asked us to make a return journey there in 2018 to flex our judging muscles once more, the whole family were delighted to go back to try their food again and I was determined to finally write that blog post – even if it’s still taken a little longer than I’d have liked.

The Bangkok Canteen is one of those hidden gems that once discovered you want to shout about to the freefrom world, whilst being, at the same time, almost reluctant to share too much, or too loudly, just in case it suddenly becomes very popular and you struggle to book a table at short notice. What I love most is that even though it advertises itself as 100% gluten-free, nearly all of the menu is also dairy-free, which is absolutely perfect for G; and with staff as incredibly knowledgeable as theirs, they are willing and able to offer great advice to those of us who need to know about the other ingredients used. Another highlight is their use of a lot of local or UK grown produce wherever possible, which means that treats such as Gloucester Old Spot Pork Panang appear on the menu – and come highly recommended having more than passed my taste test! Add in a good selection of organic, gluten-free and vegan beers and wine and you really can’t fault this restaurant for its allergy offerings.

Over the last few months, as I have well-documented on my blog, we have taken the decision to allow M a little more freedom with his food choices when we eat out or are on holiday. That’s not to say that he suddenly eats completely normally, but with the complete support of his gastro consultant, we increase his medicines to help dampen the reactions he experiences when he tries more than his staple diet at a meal-time. This time round he decided to stick with the base ingredients we know he can eat – think chicken and prawn – whilst adding some flavours that he longs to enjoy again – sweet and sour for example. Both children chose some familiar favourites and were thrilled to be able to safely pick starters, main courses and puddings, although the generous portions meant we ended up with far more food that we could really comfortably manage. I opted out of a dessert of my own, preferring a pot of jasmine tea to finish my meal, but the banana fritters and Thai custard cake, served with dairy-free and vegan ice-cream were a big hit with both G and M. It really was fantastic to be able to enjoy such a delicious 3-course meal as a family and I’ve no doubt that we will visit the next time we’re in the Gloucester area.

The food at the Bangkok Canteen is fabulous and delicious and it really is incredible to have found a restaurant that is so switched on about their freefrom offerings. I wouldn’t hesitate to recommend this Thai restaurant to anyone in the area, or visiting the area, who wants a truly exceptional dinner. My one recommendation would be to make sure you book a table in advance as it appears to be a popular destination for dinner in Gloucester; and one not to be missed.

Polar Dip

Despite the assertions of some Canadian friends that it couldn’t be a “real” polar bear dip without having to break some ice, in the middle of December Mike decided to take part in our local New Year’s Day polar swim. With just a smidge over 2 weeks to prepare for this madness, you wouldn’t be blamed if you thought Mike was completely mad – believe me when I say it was something that went through my mind too – but the reason for it is actually a fantastic one.

You have all heard me talk a lot about the amazing charity, Over The Wall, who provides free therapeutic camps for children with serious health challenges as well as their siblings and families. G and M have been fortunate enough to go to these camps twice each over the last 3 years and the difference it has made to them both is incredible. Since G’s first trip to the South Siblings Camp in 2016, we have taken every opportunity we’ve been able to find to raise awareness and funds for them – from M’s presentation at school to G’s sponsored hair-cut. I’ve talked to more people than I can even begin to count about just how special this charity is and in the last year have been delighted that 2 fellow EGID Mums were successful in their applications for camps too.

2019 marks 20 years since OTW’s first camp in the UK and they are looking to mark that anniversary by being able to send 1,000 children, young people and families to one of their camps. We want to help them achieve that goal, knowing from firsthand experience just how invaluable their camps truly are, and will be spending the year finding new ways to support them just as they have supported G and M.

And that’s why Mike kicked off our fundraising year in style with his Polar swim. He chose to swim in 9° water for 20 minutes – 1 minute for every year that Over The Wall is celebrating this year – and we set a tentative target of £200. Thanks to the generosity of friends and family, Mike not only more than managed his New Year’s Day dip, but also raised a fantastic £223!

If you’re able to give even a small amount, I know that Over The Wall will make very good use of it and you will be helping enrich the lives of young people living with health challenges, just like G and M. You can donate via their special 20 years donation page here.

Welcome to 2019

It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.

To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.

However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.

Here’s to a year of discovery and wonder for us all.