Rocky Road

Over the last few months, I have been encouraging G and M to become more engaged with the treats they like to eat, in particular asking them to find, choose and make the goodies they want to eat themselves. Part of my reasoning was to make sure M has some safe desserts to include with his lunch at school as it’s so difficult to buy safe options for him, and part was to help them both develop the skills they need to cook safe food in the future. It has been a mixed success and as soon as their initial enthusiasm wore off, the number of biscuits and snacks they had similarly reduced to almost nothing. However, after a couple of busy weeks at work, I decided to seek solace in the baking process myself and chose to experiment with adapting a new recipe for them both to enjoy.

My starting point was a favourite treat of mine, which I thought I could adapt, but actually needed me to perfect another biscuit first before I could even attempt the final product. I love shortbread, especially at Christmas time and I thought that an M-friendly shortbread might be a great starting point and something G and M would both like on its own. Some quick online research and I found a great and simple shortbread recipe, which thanks to our recent successful introduction of Vitalite dairy-free margarine to M’s diet, only needed me to swap the flour to make it perfect for him. It didn’t take long to whip up the first batch and G and M were delighted to taste-test them for me.

With the success of the shortbread in my back pocket, it was time to turn my attention to my final goal – M-friendly Rocky road. This time I recruited G as my kitchen help and she enjoyed the tasks of chopping the Freedom mallows as well as smashing some of the shortbread into bitesize pieces too. Whilst the standard recipe calls for the inclusion of raisins or cherries in it, we haven’t yet introduced them into M’s diet and so instead used dried banana chips, which again had some attention from G and her trusty rolling-pin. Moo-free chocolate has proven to be another safe option for M and was the final ingredient needed for the recipe.

An hour or 2 in the fridge and the Rocky road was ready. It was another resounding success with G and M and they certainly enjoyed the week or so that followed as either shortbread or rocky road was included in their packed lunches every day. Even better, M was so taken with both recipes that it reignited his interest in doing some safe baking himself and he spent a Saturday afternoon making the shortbread and prepping everything for the rocky road before he had to head to bed. He even told me off for not having put my recipes onto my blog quick enough for him to find and follow – so here they are, ready for the next time my youngest ventures into the kitchen!

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#HumboldtStrong

12 months ago we #putoursticksout as the ice hockey community around the world were united with that in Canada in grieving the tragedy of the bus crash that took the lives of 16 young people, their coaches and advisors and forever changed the lives of their families as well as those of the 13 survivors from the Humboldt Broncos hockey team.

This was the horrific embodiment of every parent’s worst nightmare and it really struck a chord deep within me that I still feel today. In the last year, I have continued to follow the stories of that night and the recovery of those who survived the crash, celebrating with them every small step along the way. This devastating event has been heartbreaking, but has also seen incredible moments of inspiration: Green Shirt Day was inspired by the decision by one player, Logan Boulet, that he wanted to register as an organ donor and in telling his parents that that was his choice should anything happen, helped save 6 lives even as his was lost.

Today our sticks might not be out, but our thoughts are with those 29 families forever impacted by those events and we continue to hope and pray for healing for them.

#WeareHumboldtStrong

Pizza and Ballet

One of the Christmas presents we were treated to this year was family tickets to go and see Matthew Bourne’s “Swan Lake” at the Bristol Hippodrome. We have only been to a couple of ballets with the children over the years despite our love of the theatre and my Mum was keen for us to experience this unconventional retelling of this classic ballet. Of course, no family evening out can start without dinner out too and this time round, partly as we were later arriving in Bristol than we’d originally planned and partly because, well, why not, we decided to veer away from our known safe restaurants and look for somewhere new to try.

It’s always a challenge when eating out with G and M because of their dietary needs, but our decision over the last 18 months or so to relax M’s restrictions on high days and holidays in order to find a better quality of life and balance for him means that on occasions like this, we’re able to eat in places where we’re confident he can choose safe ingredients to make a tasty meal. We know that there are a number of restaurants near to Bristol Hippodrome from Pizza Express to Wagamama, so I made the suggestion that we wandered up Park Street to see what else might be available, with our end target being Pizza Express if nothing else seemed to suit.

About halfway up the hill, we stumbled across the marvellous Molto Buono restaurant and, spotting gluten-free pizza bases on the menu, decided to stop there and see how their food measured up to the children’s somewhat exacting standards. It didn’t take too long for G and M to decide what they wanted to eat and were delighted to discover that as well as gluten-free pizza bases, the restaurant also had vegan mozzarella available as a topping. Much to my surprise, G opted for the GF Marinara pizza – tomato sauce, olive oil and oregano – and M chose the GF Diavola – tomato, salami and vegan mozzarella. Mike joined them in trying one of handmade pizzas, whilst I settled on a pesto pasta. The dishes that arrived looked amazing and tasted even better with portion sizes that satisfied even the voracious appetite of the youngest member of our family. I wouldn’t hesitate recommending this restaurant – excellent food, prepared simply, served quickly and all at a great price.

Fully satisfied by our meal and with more than enough time to meander our way back towards the theatre, our evening had started in fine fashion. We all then sat enthralled for the next couple of hours as the story of Swan Lake unfolded before us. Matthew Bourne’s interpretation brings a more modern-day twist to the tale and replaces the well-known Dance of the Cygnets with an incredible male troupe of swans instead. The dancing was incredible and brought real inspiration to both G and M as they watched it in absolute awe, something that should never be under-estimated as M had expressed his concerns about watching a ballet – “…there are no words to explain what’s going on, so how do you know the story-line..?” before it even began.

I think we would all heartily recommend seeing this production, though it turns out that I’m something of a traditionalist when it comes to the setting, much preferring the classic portrayal of the Swan Lake tragic love story. It was fascinating to talk to G and M about their thoughts on the production, with M uncertain as to whether the second half was a dream or not and both expressing the view that the role of the Swan/Stranger represented the 2 sides oft he Prince’s psyche. This was a performance that really challenged everything we knew and expected of a ballet and was a truly amazing experience. Despite my hesitations about some parts of this version, I am fascinated to see how Matthew Bourne has adapted and updated other ballets and hope to be able to see another of his productions soon.

Birthday blessings

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

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

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

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

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

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

Two Teens…

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

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

Happy 13th dude – we love you always!

Be my Valentine…and #SpareARose

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

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

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

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

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

Happy Valentine’s Day!

#FFFA19

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

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

My highlights of this session were:

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

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

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

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

My highlights?:

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

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

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

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

Young Carers Awareness Day 2019

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

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

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

Jamie-Lynn Sigler

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

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

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

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

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

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

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

Battle of the Birthday cakes

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

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

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

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

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