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.

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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.

15 already!

Every year I feel as if I’m saying the same thing, but here we are once again and my beautiful firstborn has hit 15! (Well nearly as she won’t actually turn 15 until after 11pm tonight)

Happy birthday to my gorgeous, but sometimes grumpy girlie. I hope it’s as fabulous a day as you are xxx

 

Small businesses too good to miss!

There really is something very rewarding about shopping local and supporting small businesses and that is even more true when those small business owners are also friends, or become friends as a result of their business. We have been extremely lucky over the last few years to develop friendships and therefore fantastic working relationships with food producers who have, as a result of those friendships, readily taken on the challenge of feeding M, even at his most restricted, and succeeded to the absolute delight of us all. I would really recommend getting to know your local farmers and food producers and don’t be afraid to strike up a conversation with them to see if they can help – you might just be surprised by their reply.

Borough 22 is one such success story and someone I love to shout out about on a fairly regular basis as you’ll quickly discover if you browse my blog. Created by the incredibly talented Ryan, who holds the as yet unchallenged place of ultimate superhero in M’s heart, this company bakes the most delicious allergy-friendly doughnuts, which have graced our table on many occasions. I discovered Ryan through the FreeFrom Food Awards a couple of years and he readily accepted my challenge to create an M-friendly doughnut using just the 5 safe foods M had at the time. Not happy with just creating a passable doughnut, Ryan continued to try to perfect the recipe each time we ordered until he produced a masterpiece that has kept us all delighted. With the countdown to Christmas now fast approaching, I will be placing our order for doughnuts soon and would highly recommend you beat the final order deadline of December 12 to add these unmissable treats to your seasonal table.

Another favourite was also a discovery thanks to the FreeFrom family of Awards, though this time the Eating Out Awards, rather than the Food Awards. Café Nouveau near Frome is a worthy three-time gold winner and owner Susan has become another family favourite since we first judged the venue 3 years ago. She has also embraced the challenge of feeding M safely and was delighted to hear this year that his list of safe foods had expanded enough for her to try a new dish when we visited as part of this year’s judging panel. This paragraph is something of a confession to Susan, who I know is a regular reader of my blog, as we had gone on the pretence of a late birthday lunch for Mike, carefully concealing the fact that it was a convenient cover story for our judges’ visit. This anonymity is critical when acting as a judge and it was fantastic to see first-hand that Susan’s care for her customers extended to all who were visiting the café that afternoon and not just those she might have suspected! G loves eating out here as she can happily choose anything from the menu and was delighted by the prospect of safe waffles the weekend we visited, though she was disappointed to learn they had run out of the dairy-free ice-cream she was hoping to sample.

My final shout-out is for a new business to my blog, but one that we are delighted to have found. Ben is an ex-work colleague of mine and he and his wife Mandy have become firm friends over the last few months. They own a small-holding just outside of Bristol and Ben has ventured into the world of producing home-made meat products, including some great gluten-free options, through his business, Ben’s Farm Kitchen. G has been delighted with their delicious GF honey roast sausages and sausage rolls, whilst Mike and I have become big fans of the “normal” and GF scotch eggs, especially the pickled beetroot ones. However, the real success story has been their willingness to try and prepare M-friendly sausages and burgers, which has possibly been one of the highlights of 2018 for M. I worked with Mandy to make sure the ingredients used were as safe for M as possible and the meat mix she created has been a huge hit in our household. M has already asked me to make sure we have a supply of “his” sausages and burgers in for Christmas and that’s a request I’m delighted to fulfil. Not only do we know the provenance of the food we’re eating, but I’m reassured that they want to get it right for the family as much as we do.

Supporting local business

As Christmas fast approaches, we are all in that mode of frantically searching high and low for the perfect presents for our loved ones, or, at very least, the best price for whatever it is they want. My two are complete opposites when it comes to writing their Christmas wish lists: M knows exactly what he wants, be it the latest computer console and games (PS4 and Fortnite), musical instrument (electric bass guitar plus amp) or the slightly more random Tempur mattress (just don’t ask). Whilst these all come with a significant price tag and the ongoing conversation about having any one of them as a joint Christmas/birthday present, at least we know what to look for, although I’m not convinced he’d be that happy if all he got was a new mattress!

G, on the other hand, is a little more challenging. For the last couple of years, her list has been small and fairly inexpensive, which is great from a financial perspective, but far more challenging given she’ll be turning 15 just 2 weeks before Christmas and various family members want suggestions for both occasions. Having given the best idea to my Mum, I’m not quite sure what Santa will find to leave in her stocking this year, but hopefully with some hard work, heavy head-scratching and even brainstorming, we’ll get there in the end.

One of things that I love to support is local business whenever possible and I’m sure I’m not the only person to have spotted the memes on social media asking folks to consider buying from small, local businesses at this time of year to find something truly unique when it comes to gifts. We’ve been doing our bit to support our local business community for at least 10 years and love discovering new opportunities to do so along the way. We started with buying our weekly groceries from our local food co-op, who source local meats, dairy products, fruit and vegetables, baked goods and even ready meals and deliver to our door. They work very much in the same way as some of the bigger names in this market, but with all the added benefits of locally grown and produced seasonal products, thus reducing our carbon footprint as much as possible. Our nearest big city has an active fruit and vegetable market too and so they can also offer the more “exotic” items, such as bananas, which means we’re not heading to a big chain supermarket for just a handful of groceries too often.

Over the last 15 months, we’ve been supporting another local enterprise and one which is bringing great health benefits to us all. A local farm has converted one of its unused buildings into an environmentally friendly swimming pool, using water from its own bore-hole and heated by burning grass grown on the farm. It has a limited occupancy due its size and so rents the pool out on a private basis to small groups, who can book a regular time slot to spend there swimming. Every Tuesday evening at 8.30pm, our family can usually be found eagerly splashing into the pool, ready and raring to go for 30 minutes swimming time. It is conveniently close to us – just 10 minutes from home by car -, impeccably kept and we have developed a passing acquaintance with the 2 groups, 1 family and 1 a group of friends, who swim in the slots before us. We are allowed access to the spacious changing rooms for the 15 mins before and after our slot and despite my fears that M and G would dawdle, they both manage to get themselves showered, changed, dressed and ready to go by 9.15pm at the latest.

Even better, not only does this local farm provide this fantastic facility which has seen M’s confidence in his swimming skills soar whilst G, but we are also able to buy fresh eggs from the farm door on an honesty box system and their Christmas offerings include beef and turkey. I have long said that we have the best of all worlds where we live, being just 8 miles from the centre of a vibrant city with amazing theatres, music venues and sports stadiums, but having a cottage on the edge of farmland and being able to see fields and green spaces for miles. The children have grown up with a dairy farm just across the road and are accustomed to seeing cows or sheep in the field next door whilst they’re bouncing on the trampoline in our “paddock”. I love being able to access so many things so easily, even the coastline is just 20 minutes away, and truly appreciate and understand just how lucky we are. Supporting the small, local businesses that are trying to survive and thrive in challenging times is just one way we can help our local community continue to grow for years to come…and hopefully will help me source some great presents for G in time for December!