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7Y2D COVID-19 Diaries – Week Two: “It’s school kids, but not as you know it”

Two weeks into the UK-wide COVID-19 lockdown and we are all slowly adjusting to life as we currently know it. Everything was turned on its head a bit this week, when Mike was furloughed from his job in line with the government’s job retention scheme. This didn’t come as a particular surprise to us as so many businesses are having to consider carefully how they can best weather this storm, but it does mean that the dynamics in the house have changed as Mike adjusts to both life as a house-husband and the nuances of how I like my day to unfold when at work.

G and M are currently doing okay with the sudden and continued disruption to their daily routines, though the end of the week saw tempers fraying a little as they spend almost every waking moment in much closer proximity to each other than they’re used to and with no real end in sight. Our dining room has become their school room every morning until lunchtime, when they can then close the door on their virtual lessons for another day. Their school work is more challenging not just for both of them, but also for me as I try to juggle numerous conference calls, zoom meetings and my own workload with their needs of support and guidance with the work being set for them online.

G is capable of being reasonably independent with her learning and has faithfully put in 2-3 hours every morning on continuing her GCSE revision timetable. By the end of the week, school had added work plans to prepare the Year 11 students for their A-levels due to start in September, so, having asked me to buy the pyschology textbook for her, G will be beginning the introductory tasks set to prepare her for those courses.

M similarly is working really hard at the lessons and homework being set for him, but is inevitably finding the quantity of different notifications he receives overwhelming to cope with on a daily basis. We have talked about the best way for him to work through everything that has been set and agreed that a balance between those tasks with the earliest due date and those he’s most interested in is the best way to go. He is completing the online tests and either uploading or emailing his completed work for his teachers to check and review. I have been impressed with his attitude to approaching his school work and he is keen to not miss out on his learning by not completing what he needs to do.

Their afternoons are spent with a mix of outside exercise and some much-needed fresh air, alongside spending time on their electronic devices. There’s no question that they are spending more time in front of a screen than we would normally allow, but their phones, and even M’s PS4, have become invaluable tools for staying in touch with their friends. Whilst G is happy spending time on her own and exchanging occasional text messages with her closest friends, M very much misses the daily interaction with his school mates. A much-needed gaming session on Friday evening allowed

him time to catch up with a few of them and he was unquestionably happier for it.

I’m not really sure what week 3 will bring for us all. It’s technically the first week of the Easter holidays, but we’ve agreed to keep going with a few hours of schoolwork whilst we’re in the midst of this weird hybrid of school-holiday-home-life. I’ll still be “going to work”, though probably in Mike’s home office now that he’s on furlough and Mike will hopefully complete a few of those jobs that have been lingering on what my wonderful Canadian sister-in-law calls his “honey-do” list.

Learning to Cook

A few years ago we encountered some problems when G wanted to learn to cook gluten- and dairy-free recipes in her school cookery classes. Her teacher appeared reluctant to help G learn how to adapt the “normal” recipes to suit her dietary needs and even told her that she would have to bake a normal red velvet cake because baking an allergy-friendly one would require too much work. It was not the most auspicious experience we would have with their school and one that would leave me feeling a little jaded about what might happen when it came time for M to start his round of food technology lessons.

Fortunately, M’s Year 7 teacher was willing to work with us when it came to each of the dishes he would be preparing in class and all in all, it was a positive start to M’s life at secondary school. This year M found himself once more in the cycle of food tech classes and all I could hope was that his Year 9 experience would be as good as his Year 7 one. As luck would have it, his teacher this year was keen to make sure that M could learn how to cook safe food for himself just as his classmates do and encouraged M to adapt every recipe to suit his particular dietary requirements, no hesitation and no fear that it would be too difficult to manage.

Having a teacher that not only helped M learn to cook, but who was also interested to find out more about how and why we made the adaptations we do was a huge boost to M’s confidence. Her attention to detail and preparedness to make sure that the cross-contamination risks of sharing a classroom kitchen and work-spaces with other

13 and 14 year-olds were reduced as much as practicable helped reassure him every week he cooked. M even shared my blog with her as he wanted her to understand more about his condition and see the many recipes that I’ve already adapted to suit his various allergy needs.

From chicken biryani to a prawn stir-fry and chilli con carne to a cheese and potato pasty (although that one wasn’t safe for him), M flexed his cooking muscles and has learned some great new skills that will stand him in good stead in the future. Our thanks have to go to a fantastic teacher who didn’t see M’s food allergies as a barrier to him learning to cook and worked with him to make sure that his health issues don’t stand in the way of achieving whatever he sets his mind to: that’s inclusion at its very best.

#FFFA20 Confectionery

Now, I fully accept that there may be some of you out there wondering what on earth a PWD* is doing even considering judging a category at the #FFFA20 called “Confectionery”, but let me assure you, it means that I don’t tend to over-indulge in the first few mouthfuls and with 35 entries in total – 32 of which were chocolate-based – that’s definitely a good thing! On a more serious note, my Freestyle Libre gives me the opportunity to have tight control on my blood sugars at all times and helped me keep things on an even keel that afternoon.

 

I love judging this category as I have 2 food-allergic children who enjoy the occasional sweet treat and it’s always a great opportunity to find something new to tickle their taste-buds. After a busy morning trying the delights of “Meaty and Fishy Ready Meals” and a wonderfully refreshing light lunch prepared by Michelle and her #FFFA team, we were ready and set for the challenge ahead. And believe me when I tell you that tasting and judging so many sweet entries really can present some problems, especially when trying to give constructive comments to the 3rd dairy-free dark chocolate in a row!

These were my highlights:

M&S Fizzy Dinosaurs: In a category that was dominated with chocolate offerings, it was great to find these sweet treats. It took a while for us to realise that M reacts to gelatine, so we are always delighted to find sweets that are gelatine-free and delicious. He and I both love sour, tangy, fizzy sweets, so I knew the moment I tried these dinosaurs that they would be a big hit with my youngest…and the speed with which the bag I took home with me disappeared would absolutely support that!

Truffle Pig Truffles: We tried several truffle selections on the day, and these stood out from the crowd with their wonderful Butter Nut variety, which was perfectly reminiscent of their more well-known dairy counterpart, Ferrero Roche. The peanut butter content obviously means these are not safe for those with nut allergies and disappointingly to me, even though they are vegan and delicious, they are not soya-free either. A great treat that would be a brilliant gift and make the recipient feel truly spoiled, but not one for our household yet.

My Sweet Chickpea: The surprise success story of the day for me, and one that has proved to be popular at home too. There were 2 flavours that we were lucky enough to try: cappuccino and coconut, and both were delicious. The chickpea was not at all detectable, something which I tried out and proved with G, who was surprised to learn it was a key ingredient. Dairy-free, soya-free, hidden chickpeas and snack-size – what isn’t there to like about these?!

Moo-free Sea Salt & Lime Chocolate: I am not the biggest fan of anything salty and I definitely do not like caramel, so the whole “sea salt and caramel” revolution has passed me by, even though I’ve successfully created a safe version for G and M. So, I was intrigued by the lime and sea salt flavour offered by Moo-free and this will probably have me raving for weeks about it. A perfect balance to the sweetness of chocolate and very definitely more-ish. This is my winner of the day, not least because it was one of the few chocolates that was both dairy- and soya-free.

All in all, it was a great day of judging with lots of memorable products and not too many that completely missed the mark for me this year. The final award winners will be announced on 28th April, so keep an eye on your social media to find out who won those much-coveted golds.

*Person With Diabetes

#FFFA20 – 5 years on

Last week saw me back in London for one of my all-time favourite events of the year: judging a couple of categories for this year’s Free From Food Awards (#FFFA20). It hardly seems 5 years since I completed my first stint and I can honestly say that every year since has been fantastic. It’s a day spent with an amazing group of people from the free from community, be they bloggers, allergy sufferers, parents of children with allergies, food manufacturers or producers. Every year sees me widening that tribe of mine and I absolutely love getting to know new people and oft-times linking faces to names I’ve seen across the various social media platforms I frequent.

This year saw me return to 2 of the categories judged at my first FFFA in 2016 – “Meaty & Fishy Ready Meals” and “Confectionery”. As ever I’m always on the lookout for new possibilities for both G and M and even more so this year as we see the number of safe foods for M slowly, but steadily increasing. I find it fascinating to see what products are entered into each category, particularly with the “Meaty & Fishy Ready Meals” as the range of options can be so wide. From 10am, we were tasting and critiquing breaded fish, breaded chicken, sausages, burgers, a few microwave meals and even a prepacked sandwich. What was particularly great this year was that there was nothing that was really dreadful and whilst not everything might have been to my taste, the final award winners are all very much deserved in my opinion.

My own highlights from this category include:

M&S Made Without Wheat Honey Roast Ham and Mature Cheddar Cheese sandwich:  Honestly, if I hadn’t known that I was eating something freefrom, I absolutely would never have guessed. Forget dry bread, hole-y bread, doesn’t-really-taste-like-bread bread…this sandwich was unquestionably as good as its gluten-filled counterparts and generously filled with ham and cheddar cheese. If I had to find a criticism, perhaps that it is a little limited in just being gluten-free, but that really is being incredibly picky. It didn’t really “fit” with the rest of the entries in the Ready Meals category, but with no “Foods to Go” category this year as part of the #FFFA20, I don’t object to it having been entered. This is definitely one that I would recommend to anyone needing or wanting to follow a wheat-free/gluten-free diet.

Co-op Irresistible Pork Sausages: “Wow!” – my honest comment after a taste of these sausages. We are, without a shadow of a doubt, a family that enjoys any meal including sausages and indeed G’s favourite and go-to meal is a plate of bangers and mash. These were delicious – juicy, succulent and absolutely more-ish, the description of these GF sausages as “irresistible” couldn’t be more accurate. We buy nearly all of our meat from our local farmers’ cooperative or from our small-holding friends, but it was great to discover such a good product at a competitive price in a supermarket chain.

Co-op Chunky Breaded Cod (MSC-approved): There were several free-from fish fillets to compare, as this photo shows, but this is the one that absolutely stood out to me. The crumb coating was crispy and robust and the piece I took didn’t fall apart on the fork before it had left the plate and reached my mouth. Well-seasoned, tasty and a balanced mouthful where the fish was definitely the highlight. Even better, the cod is responsibly sourced and MSC approved, which really made it stand out from the crowd.

Tesco Free From Chicken Korma with Rice: A more traditional ready meal in my eyes and a fantastic one at that. Not only gluten-free, but top 14 allergens free and included an interesting mix of brown rice and quinoa in the dish which made it stand out from a competitive crowd. It has been on the supermarket shelves for a little while as this was one of the dishes we were lucky enough to be sent to try just after their launch, but it reminded me just how good these ready meals really are. A rich creamy flavour, which was well-balanced and didn’t taste too watery despite being microwave cooked, something I have found to be the case with other similar ready meal options.

As you can see, it was a real mix of what I would consider the more traditional ready meals that are ready in minutes and foods that need little preparation other than cooking. It was great to see offerings from many of the major supermarkets and, whilst I didn’t mention them above, there were also some good options from both Aldi and Lidl. I love seeing more and more supermarket chains coming on board with their free from food choices and making them more available and affordable than they perhaps have been before.

Sweet Sixteen

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 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.

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?

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.

Hair today…

…and gone tomorrow!

It’s an old joke, I know, but it sums up perfectly the start of the new school year for G. For those of you who’ve been following me for a while, you may remember that 2 years ago G took the plunge and decided to cut her beautiful long hair for charity. She donated the hair itself to the Little Princess Trust, who use it to create real hair wigs for children who have lost their hair due to intensive medical treatments. G also took the opportunity to raise funds for Over The Wall and it turned into an impressive occasion, leaving her with a very grown-up hairstyle as well as raising £500, which was then match-funded to create a staggering £1,000 fundraising total.

Over the summer months, G has been talking once again about wanting to cut her hair – I think the hassle of combing numerous tangles and knots out of it had all become too much – and so at the end of her second day back at school, she headed to our local hair salon and once again braved the cut. Mike suggested to her that she consider donating to the Little Princess Trust once again and as soon as she realised that there was enough length to allow her to do it, there really was no stopping her.

This time round she’s gone a little shorter than before, but it’s still an absolutely stunning style for my fast growing-up firstborn. We are so proud that she didn’t think twice about making the donation and even more so when she said that she wants to continue to donate her lengthy locks whenever she can. To paraphrase G, she wants to “…donate my hair, just like Dad donates his blood” – a fantastic ambition and who are we to argue.

Time to stop and smell the roses

New job, end of term, fundraising plans, health challenges, summer holidays… sometimes it really is nice to be able to stop and smell the roses, especially when they’re as beautiful as this bunch of flowers currently gracing G’s windowsill. A thank you from her Stagecoach school for all her help last week at their summer school – a small acknowledgement of her efforts and one that has very much been appreciated and enjoyed by us all.

We’re all taking a little time this week to slow down and appreciate life. With a couple of days off planned for the end of the week, I’m winding down to just spending some much-longed-for family time together and am wondering if I can convince the children to give up their technology for at least some of that time too. M is spending the week planning 101 things he wants to do with G before we have our break, whilst G tries her best to ignore him and focus on some gentle revision instead. Mike and I will complete as much work as we can and anything left outstanding will quite simply have to wait until we head back to our desks on Monday morning.

I hope you too get the chance to stop, take a breather and appreciate life in its fullest this week.