Tag Archives: family

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.

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.

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.

Finishing the summer in style

With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.

A Canadian Treasure Trove

Whenever and wherever we travel, I also keep a beady eye out for any new foods that are safe for both children. I do, of course, take an ample supply of M-friendly snacks with us as there are no guarantees that we’ll find anything that he can eat, but I always keep my fingers crossed that his hopes are met, if not exceeded whilst away from home. This year I was especially hopeful that we might find a handful of items for them both, though our last visit to Canada showed us how challenging it can be to avoid soya and corn, which can be found in the most unexpected of places.

The good news is that we did found some great snacks and even managed to bring some of them home with us to keep G and M going for a short while at least. We discovered them all at the Independent grocery shore on the shore of Lake Huron and don’t really know how readily available they are elsewhere, but I’d definitely recommend giving them a go if you get the chance. These are just a few from this hidden treasure trove:

Soy-free Vegenaise – G absolutely adores mayonnaise and can, of course, eat “normal” brands without problem. However, M often feels he’s missing out and it’s taken a long time to find a rice-based version which he can eat and even then it’s not that easy to buy it. Discovering this brand just sitting in the fridge alongside other food items was so exciting and something I hadn’t expect to be able to replace during our holiday. M said it tasted great, G was equally happy to eat it and I was delighted to carry a jar around with us for the entire 2 weeks we were there.

Laiki Rice Crackers – another big success with M were these rice crackers, not least because he had a choice between their red rice and black rice versions, something he rarely gets in everyday life when it comes to his food. They proved to be the perfect accompaniment to lengthy car journeys, of which there were several, and were surprisingly moreish, with the pack not lasting long once opened.

Daiya Cheezy Mac – It’s a well-known fact that I am a big fan of Kraft Dinner, a boxed ready meal of macaroni cheese that became a staple of my diet whilst studying at Ottawa University over 20 years ago. G similarly loves macaroni cheese and I was thrilled to find Daiya’s gluten- and dairy-free boxed equivalent for her to try. This was a resounding success with my sometimes picky eater and we brought several boxes home with us, although they’ve all disappeared now!

Made Good Crispy Squares – despite the previous successes achieved, the biggest hit of our holiday was the discovery of these Crispy squares, which came in both Chocolate chip and Vanilla flavours and made M smile for days. They came at the perfect time as we had found several gluten- and dairy-free treats for G, but the prevalence of both soya and corn, neither of which M can tolerate, was making it near impossible to find something safe for him to enjoy. I had promised to make him some banana cookies whilst we were staying at Grandma and Grandpa’s house, and whilst I did that also, the addition of crispy squares to our rucksack each day made a huge difference.

Eating Out with Allergies in Toronto

There’s very little we love more as a family than finding the perfect places to be able to go out and eat a safe meal together. Having found some wonderful restaurants and cafes in both the UK and abroad since M went elemental 4 years ago, we couldn’t wait to see what Toronto might have to offer. The first part of our holiday spent near Lake Huron with Mike’s parents meant that we ate home-cooked food with a few very welcome additions that we discovered at the local Independent grocery store; whilst at the Beachwood resort we were very grateful to their accommodating chef, who agreed to whip some plain rice, chicken and bacon for M to enjoy.

It was once we were downtown in Toronto that we really had a good chance to get out and explore what restaurants we could find. I had taken the precaution of packing our usual extra suitcase full of safe foods before leaving the UK, had kept it topped up with the new treats we had found and booked to stay in a self-catering apartment fairly close to the lake – just to make sure every base was covered when it came to feeding my hungry pair. Our biggest disappointment was that there are no longer any Hard Rock Cafes in Toronto, so we had to search hard to find a great alternative.

Our day spent at the CNE meant that we didn’t venture too far to find our meals, instead heading into the expansive food building to work out what from the hundreds of offerings might be safe for both G and M to eat. Mike and G went in one direction to find her ideal lunch, whilst M and I disappeared in a different one to find his. My wonderful sister-in-law managed to secure a table in front of the Colossal Onion booth and we all eventually wound our way back there to actually sit down and enjoy some food. M was thrilled to find some apple fries dusted with sugar and I then queued an inordinately long amount of time at the aptly named Bacon Nation to buy a cup of bacon to provide his protein, where I refused to even consider the purchase of the $100 Gold Burger, though I did see someone else carrying one away from the counter. Fortunately, we were carrying a number of rice-based snacks around with us too, so it wasn’t the completely unbalanced meal that perhaps it sounds!

For our one meal out, we chose to go to Jack Astor’s Bar and Grill, thanks to some frenzied internet-searching on my part to find an allergy-friendly restaurant to try. They had a good array of gluten-free offerings to choose from and both children opted for a bacon cheeseburger, without the cheese. Decisions made and food ordered, G and M enjoyed writing and drawing on the paper tablecloths whilst they waited for their meals to be cooked. The plates of food that arrived looked amazing and didn’t last long with either child – a sure sign that the food is good. The portion was as large as we’ve come to expect with Canadian servings, but that didn’t stop them eating it all, although we had no complaints about being hungry for the rest of the evening!