Author Archives: bluesingingdragon

About bluesingingdragon

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

Last night of the Welsh Proms

There might still be a little time to wait until this year’s Last night of the Proms, but a couple of weekends ago, we were lucky to be able to make the road trip to Cardiff to celebrate the Last night of the Welsh Proms – and what a fantastic evening we enjoyed. Mike and I have been before with the Welsh side of my family, but this was the first time that G and M came too and it turned into a family affair with my Mum and Aunt both joining our gang. As you might expect from the great British tradition of the Proms, the night was filled with a selection of well-known classical pieces played by the Royal Philharmonic Orchestra ably led by the hugely talented Owain Arwel Hughes, who is South Wales born and bred.

One of the highlights of the evening was, without a doubt, the world premiere of Mealor’s Concerto for Euphonium, which demonstrated the incredible talents of musician David Childs and kept the audience spellbound throughout its duration. Both children enjoyed the first half, though M was more than a little restless throughout, not fully expecting to have to sit still and listen whilst the music played. G has been more enamoured since discovering that her great-great-grandfather played the euphonium in his local band.

The second half of the concert, however, was when their enthusiasm really came into its own, even considering the slight handicap of them only knowing a few words in Welsh. My Mum had spent the week teaching them one of the Welsh songs and both children had a good attempt to recall the words, no matter how fast the music was playing. Flags were waved, songs sung and the entire audience stood up and sat down as the whim of the conductor dictated. The concert finished with a rousing rendition of the Welsh national anthem, Hen Wlad Fy Nhadau (Land of my Fathers) sung only as the proud voices of the Welsh valleys could do so. It was a lovely evening with some fantastic music and I can’t wait to take the children along again.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

“This is my one small step, this is my walk on the moon”

I’m not quite sure how this happened. Two years ago marked the end of G’s Junior school career and now we find ourselves at the cusp of a new adventure for us all as M’s time at the Juniors similarly draws to an end. The past 4 years have been a true roller-coaster ride and the staff at our wonderful village school have been there for every step of the journey. From the moment we stepped through their doors, they have embraced the challenges of having M in the school and provided the whole family with the support we’ve needed to get the children through all those ups and downs relatively unscathed.

In some ways, the last 6 months have been the toughest of his school career, even more so than the NG-tube and broken leg we’ve dealt with in that time. He wasn’t able to attend his Year 6 camp because of poor health, but he found the joy in spending the day there getting muddy with his friends instead. We survived the stresses of SATS and celebrated in style last weekend when we found out just how well he did in passing them all. We’ve enjoyed the Year 6 production of The Wizard of Oz and are finally winding down to the Leavers’ Service at the end of the week.

This comment in his end of year report from his class teacher reflects the wonderful young man he is growing up to be:

He is an inspiration to his peers that in spite of his health issues, he participates fully in everything and does not use his illness as an excuse not to try….Thank you M, for being such a valuable member of the class this year. You contribute more than perhaps you realise!”

As we wave goodbye to the end of an incredible era, there will be more than one tear shed along the way, but we are preparing to embark on the next big adventure, building on the incredible foundation that has been put in place with great care, love and consideration over the last few years:

Carnival Magic

Never being one to let something get in my way, I’ve tried to instill that same determination to succeed in both G and M. This time last year was the perfect example of this, when M took part in our local carnival parade, albeit in his wheelchair, and G stretched her self-confidence to become one of the dance captains leading their Stagecoach school as they danced their way along the carnival route. Kitted out in their 70s-inspired costumes, with the likes of Tragedy, Night Fever and Disco Inferno blaring out to get not just the kids, but all the spectators dancing too, they definitely captured an essence of Rio de Janeiro on the day.

This year we were back again, though our carnival offering really couldn’t have been more different to the party atmosphere of 2016. G and M were both keen to be a part of our church’s carnival float and relished the opportunity to choose the characters they wanted to portray from that classic fairy tale, Beauty and the Beast. With her long dark hair, G was perfectly suited to playing the part of “Belle” and suited the yellow costume I managed to pull together in the 10 days leading up to the event itself. M in the meantime, conspired with his best friend at church and agreed that he would play “Lumière“, whilst C would be “Cogsworth“. M’s final outfit certainly did the job, though the glorious June sunshine made for one very hot and slightly grumpy child once the parade was over. The carnival float itself looked amazing and the children loved being able to sing along, dance and wave to everyone as it carried them down the street. I love being part of such a fantastic local tradition and can’t wait to see what next year brings for yet another repeat performance.

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

Supporting our favourite Foodpreneur

Every now and then you stumble across something wonderful that makes an unbelievable difference to your life or that of those around you. Since I uncovered this brand at the Free From Food Awards 2016, I’ve not hesitated to sing the praises of this particular allergy superhero from the proverbial rooftop and finding myself in the position to do this once again, I’ve not hesitated in lending my voice in support. The best thing about this particular discovery is that M’s superhero has become a firm family friend in the 18 months since our first conversation and for all the right reasons. Not only did he lovingly create sweet treats that went beyond the wildest dreams of M and G and were deliciously safe for them both, he has also sent messages of love and support, not just when M broke his leg last year, but as he prepped for his SATS this year too.

Up until a month ago, I’d never even heard of the Virgin StartUp Foodpreneur 2017 competition, but I’m now eagerly waiting for the final results with fingers and toes tightly crossed for our favourite foodpreneur: the awesome Ryan, from Borough 22 doughnuts. The competition looks to recognise and celebrate UK-based food and drink startups, with the winner being offered mentoring from industry experts as well as a 6 weeks selling opportunity through joint sponsors, intu, who own shopping centres across the UK. From the hundreds of entries received, 15 were shortlisted for the first stage of the competition, where each startup were invited to give a 3-minute presentation about their business, why they started it and the direction they’re hoping to take it in the future. From a home-delivery wine service to vegetable- and fruit-infused water and vegetarian hot dogs to hand-crafted chocolates, there’s a lot of delicious options to choose from.

I was delighted to learn this week that Ryan has moved on to the next stage and is one of 8 semi-finalists, who will receive a week’s worth of pop-up shop space at one of nationwide intu’s shopping centres to introduce their wares to a new audience. Ryan has been given a kiosk at the Lakeside shopping centre in Essex and will be working 12-hour days, 10am to 10pm, from this Friday, June 30th to July 7th. If you’re in the area and able to stop by to see Ryan, taste his amazing doughnuts and show him some support, I know you won’t be disappointed with his fantastic freefrom ware.

And don’t forget to tell him that M sent you!

Bitter disappointment

Two years ago, M and I waved goodbye to G as she trekked off on the adventure that is Year 6 Camp and, as he had his NG-tube in place, we chatted about whether Year 6 camp was a possibility for him. I reassured him that Mike and I were both keen for him to go and would work hard with the school to ensure that his every need – medical, dietary or otherwise – was met as he needed, whether the feeding tube was still in place or not. Despite never having spent a night away from family, M wanted to go, to try out new activities and to challenge himself as opportunity offered.

One year ago, as I manoeuvred M’s wheelchair through the back gates of school and across the school field to his classroom, we breathed a sigh of relief that it was during Year 5 that he had spectacularly broken his left leg and not in the weeks leading up to the Year 6 camp. The slow reintroduction of foods following the removal of his feeding tube would not hold him back and once again I found myself reassuring him that, if needs be, I would bake a batch of M-friendly cakes or cookies to accompany him on the trip and that we would ensure that the camp kitchen could safely cater for whatever his food requirements were when he went. His week away at Over The Wall built his self-confidence as he realised that he could tackle anything he put his mind to and succeed.

For the last 2 years, M has been looking forward to this rite of passage, this week of school camp and practically counting down the days until it was finally his time to go. He has been in discussion with G about the different activities he might get to do and planning all that he would need to make the week the success he so desperately wanted it to be. I met with the school to talk over the arrangements for meal-times and sleep that would need to be in place and was confident that they would do everything in their power to make it a week to remember for him and all his class-mates.

And then 2 weeks ago, M had to make what has been, without a doubt, one of the hardest decisions in his life so far. The past 4 months of food challenges have taken their toll and when that was added to the stresses of SATS, we saw an unwelcome decline in his health that we weren’t sure could be overcome easily. Despite our best efforts and hard work since mid-May, M has decided that going away to Year 6 camp is not the right thing for him to do at the moment. To say that my boy is bitterly disappointed would be an understatement. For 2 years of longing and planning to come to nothing is heartbreaking for us all and has been a bitter pill to swallow. For M, life has just seemed incredibly unfair once again.

M is frustrated that he can’t go, but he has based his decisions on the health struggles he is currently facing and knows that ultimately it is the right choice for him. He has tried to remain cheerful in school and has been an active participant in the tasks set to his class as they have researched where they’re going and what they’ll be doing. Mike and I met with his teachers and arranged for Mike to take him to the camp today for a half-day*, so that he can join in an activity of his choice and not feel that he is missing out completely. What has made it even harder to bear is that he currently doesn’t have a place on this year’s OTW Health Challenges Camp and is instead on the waiting list, with his fingers tightly crossed that a place might become unexpectedly available.

I know that in the long-run, M will pick himself up and dust himself off and keep going, just as he always does, but it’s hard to comfort him when he’s railing against just how unfair life can be because, in all honesty, right now I agree with him and it’s hard to find the positive and that silver lining we so desperately need to cling to.

*I’m delighted to share that today’s morning has turned into a full day at camp with his friends. M enjoyed the mud assault course so much that he felt confident to stay on and try his hand at abseiling and anything else he could find the time to do.

Pub dinners and Picnic lunches

Our 2 days in Stratford-upon-Avon meant that we had to find somewhere safe to feed both G and M for all our meals and we took the opportunity to try out some new options that we hadn’t had time to explore before. As far as breakfast is concerned, these days we tend to go for the easy option, which involves taking M-friendly cereal, a couple of litres of rice milk and a pot full of raisins for a cosy breakfast in our room. The tempting array of breakfast treats, from bacon and eggs to toast and jam, is just too much for M to cope with first thing in the morning and we know that having to deal with that temptation will cause an anxiety that will last the rest of the day. Daytime snacks are also easily covered as we take a supply of rice cakes, home-baked goodies and fresh fruit for M and a selection from perennial favourite Nakd date bars, sesame snaps, fruit snacks and gluten- and dairy-free treats for G.

However, when it comes to lunch and dinner, especially if we haven’t timed our trip perfectly to allow for a packed lunch or tea to cover one of our meals, we are left to search through the shelves of local supermarkets or scour the menus of available restaurants with our fingers crossed that we’ll find something that will suit us all and keep the children full and happy. Our first night’s dinner was a resounding success and we were left wondering whether the rest of our meals would be so adequately met.

At last year’s Free From Eating Out Awards, pub chain Wetherspoons won a Silver award in the Pub restaurants category, with their impressive gluten-free, dairy-free and vegetarian/vegan offerings. I’ll be honest, Wetherspoons is not somewhere we would usually choose to eat when there are so many other world cuisines to taste, but The Golden Bee in Stratford looked welcoming and promised to be another success story when it comes to feeding M. I will confess to breaking from our norm as we checked with the restaurant beforehand to see if they could cook an M-friendly meal and then made a reservation to make sure there would be a table waiting for us and our peculiar dietary needs. As is so often the case, there was no rice option available for M, but 2 grilled chicken breasts, plenty of cucumber and 2 packets of pre-cut apple slices proved to be all our hungry boy needed for his dinner. G struggled a little to decide on what she wanted to eat, not least because she had to cross-reference between the extensive gluten- and dairy-free menus, but she finally settled on gammon and egg, which is a definite favourite of hers. I was impressed by the range of foods available and whilst they weren’t able to provide safe alternatives for dessert, the plates themselves were more than enough to feed and satisfy my hungry duo.

Our next challenge came with our picnic lunch the next day, but I thought I had another potential ace up my sleeve and was delighted to discover that I couldn’t have been more right. Thanks to friends from the wonderfully active on-line allergy community, I had heard more than once about the improved selection of freefrom foods available at Marks and Spencer and it was great to finally have a chance to test it out. The selection of “Made Without” sandwiches and wraps available for G was impressive and, in the Stratford store, incredibly easy to find, though a trip to our local M&S this week has proved a lot more challenging as they hide their allergy offerings in plain sight amongst all of the other sandwiches for sale. It didn’t take G long to zoom in on her sandwich of choice and the gluten-free prawn mayonnaise sandwich was definitely massively enjoyed. She also chose some plain crisps and was keen to try the gluten-free scotch eggs that we had spotted in the chiller cabinet. She later confessed that she hadn’t enjoyed them as much as she hoped she would because of the flavour of the sausage meat, but it was just so nice to be able to buy her some picnic foods that were just like those others would eat. We managed to find some safe cooked chicken slices for M and accompanied by rice cakes, pink lady apples and pears, we had a great picnic to keep the whole family happy.

All in all our weekend stay in Stratford-upon-Avon was a great success and both children want to visit again soon and perhaps see a Shakespeare play in the theatre.

Stunning Stratford-upon-Avon

We may have had less than 48 hours to explore and enjoy all that Stratford-upon-Avon has to offer, but we certainly gave it our best effort. We had been hoping to introduce the children to their first Shakespeare play, but felt that “Anthony and Cleopatra” was perhaps not the ideal starting point, even for our theatre-loving duo. Instead, we settled for a backstage tour of both the Royal Shakespeare Theatre and the Swan Theatre, a climb up the Tower for some spectacular panoramic views and a visit to their fantastic interactive exhibit, “The Play’s the Thing“. I would be hard-pressed to say which particular tour was the favourite, but I think that for G and M, the hands-on activities and the costumes and props in “The Play’s the Thing” just edged out the lessons learned about fake blood, lighting and the other backstage secrets that keep these theatres running.

Our Sunday was gloriously sunny and M in particular was desperate to spend some time on the river. After our successful Saturday night dinner at Zizzis, we had meandered our way through Stratford and along the riverbank, where the children spotted some boats that they were keen to hire the following day. Our luck was in and we spent a fun, though occasionally slightly stress-filled 40 minutes exploring some of the river itself. G and M both took their turn to row the boat and thanks to some cunningly strategic seat choices, Mike ended up soaked through, whilst I remained comparatively dry. It hadn’t been a part of our original plans, but was a lovely way to spend an hour giggling with the family.

Our Sunday had been glorious, but sadly Bank holiday Monday itself turned into a fairly wet and miserable day. We had decided to spend Monday looking around the various Shakespeare properties and started at The Shakespeare Centre on Henley Street. Situated next door to Shakespeare’s Birthplace, the Centre had some great exhibits exploring not just the life and works of Shakespeare himself, but the time in which he lived. G was drawn to the lengthy list of his plays and took great pleasure in mentally ticking off those she has read, although I hasten to add she’s been enjoying abridged versions, rather than the original plays themselves. She has been studying “Much Ado about Nothing” at school and was keen to not only share her knowledge of the storyline, but also to invest in her own copy of the play to read at home. She made the sensible decision to buy a version that explained the nuances of the text alongside the word themselves and couldn’t wait to get started on reading it.

M was less entertained by all we could see, though his attention was grabbed briefly by the small group of actors performing extracts from various Shakespeare plays in the grounds of his birthplace. Having gleaned all the information we possibly could handle, the children spent some time browsing potential pocket-money purchases in the shop before we headed off for our next destination. We managed to pick up a semblance of a picnic lunch, which we enjoyed riverside, sheltering under the trees from the somewhat persistent rain and then walked on to Halls Croft, a property that none of us had ever been to before. The top floor of the house contained displays of various pieces of historical medical equipment, which both children found fascinating and they also took part in the mouse treasure hunt, albeit really for a younger age group. The gardens were glorious, but the weather just a bit too wet to really enjoy and so we beat a hasty retreat and trudged our way back to our hotel and car to start our homeward journey.

G was keen to make one last stop before we set off towards home. although M pointblank refused to leave the warm and dry environment of the car once he had settled into it. So instead, G and I made our way into Anne Hathaway’s cottage, where she listened intently to the short talks we were given about what we would be seeing and the history of the Hathaway family. Unfortunately, being the end of a grey, wet and fairly miserable day, there was not much natural light coming through the windows and the low-level internal lighting, in keeping with the age of the cottage, made it incredibly difficult to see, even for my eagle-eyed daughter. Cottage toured, we made a quick exit via the unavoidable gift shop and met up with Mike and M to start the journey home. All in all we had a great weekend in Stratford and are hoping to make a return visit in sunnier times to see all those bits we had to miss out this time round.