Tag Archives: family

Bringing History Lessons to Life in Berlin

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I’m not sure if I’ve mentioned it before, but I’m a big fan of holidays. Not just the trips themselves, but I absolutely love the process from the moment we start thinking about the perfect destination to pick and, much to Mike’s frustration, can frequently be found thinking about where we should travel next, even before we’ve left home on the next one booked. We haven’t done too much travelling since our trip back to Canada last summer, but no sooner had G and I got home from our fantastic day out at the Strictly tour, than it was time to finish the packing and zip up the suitcase for our 5 day half-term break.

Our holiday was perhaps not what people expected, in that we weren’t chasing the sun with a few days at the beach, even though both G and M are desperate to go back to Greece and mention it every time they can possibly shoehorn it into any conversation. Instead, we had taken inspiration from G’s GCSE history syllabus and her learning about Superpower relations, the Cold War and Nazi Germany during the inter-War years, subjects which also happen to tie in quite nicely with M’s focus on World War 1 in his history lessons this year; and so headed to Berlin. As the children have got older, we try to involve them more and more with planning our activities whilst we’re aware from home and this trip was no different. G spoke to her history teacher just after Christmas as the school had taken a group of their A-level students to Berlin a few weeks earlier and came home with some recommendations of the best places to visit to help solidify her learning and understanding of these eras.

Armed with that information as well as the additional research Mike had carried out in the preceding weeks, we had plenty to do to fill our time and couldn’t wait to get started. I had found what looked like a great place to stay: the Citadines Kurfürstendamm Berlin apart-hotel, meaning that we had access to a full kitchen which always makes life a little easier when travelling with food allergies. We were ideally located not too far from the main retail street and within easy walking distance to not only shops and restaurants, but also the Berlin U-Bahn, or Underground rapid transit system.

Our first day started, as it so often does when we travel to a new city, with a “Hop-on, hop-off” bus tour, although we weren’t as impressed with the City Circle Tour offering as we have been with other tour companies we’ve chosen in the past. However, it gave us a great introduction to the city of Berlin itself and helped us work out how to get to the various sights on our list as well as ticking a few of them off without too much hassle. Both G and M were fascinated by their first view of the few remaining remnants of the Berlin Wall, the Brandenburg Gate and the bombed remains of the Kaiser Wilhelm Memorial Church, all of which really brought their history lessons to life.

Mental Health Awareness Week 2019: Body Image

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This week is Mental Health Awareness Week (#MHAW19) in the UK and the focus this year is on body image – how we think and feel about our bodies. I’ve talked about mental health in relation to our family before as there is no question that the ongoing challenges of M’s ill health and the restricted diets of both children have impacted not only them, but Mike and me too. Just because I’ve not written about body image issues before doesn’t mean we haven’t faced them and I thought it was finally time to try and put my pen to paper and talk about our experiences honestly.

It’s taken me a long time to become comfortable with the way I look. I am not a size 10 having, as I have often said, passed through it on my way to bigger and better things. I struggled as a teen being taller and bigger than some of my friends and again as a new Mum, when some of my antenatal group bounced back to their size 8 jeans within a ridiculously quick space of time, something I was never going to achieve. The depression that has haunted me since my early teen years didn’t help with my sense of self worth and it has taken me 40 years to finally accept that I am the way I am and that that is enough. That doesn’t mean that I don’t occasionally have a crisis of confidence even now, but I have learned to wear clothes that flatter my shape and can truly step out with confidence when everything comes together to help me feel good about the way I’m presenting myself to the outside world.

There is no question that G is the spitting image of Mike and his side of the family, which gives her beautiful tanned skin and dark hair, although her build is very similar to mine. She has struggled at times with not being as slender as some of her friends and these days complains that she appears to have stopped growing whilst her friends are still inching past her. She is a beautiful young lady on the inside as well as out and we encourage her to find her worth in the way she behaves and reacts to the people who are around her and not her physical looks. We have all heard the criticisms of both print and social media and the airbrushed images that all too often create unrealistic expectations in our children and young people. The increasing popularity of taking selfies and then using social media filters to manipulate the image presented to the world can add to our unrealistic perceptions about the way we should look. I still remember a discussion we had with one of the paediatricians when she was little, who told us that the danger these days is that our perceptions and expectations of body shape and size are such that we fail to recognise when people are a healthy weight for their height and instead view them as overweight. G is learning to eat healthily, keep active, believe in herself and, most importantly, to not constantly compare who she is to her friends.

It is easy to believe therefore that if you’re slim you have no reason to have body image issues, but I can tell you that’s not true either. M is the complete opposite to the rest of us and has always been on the slender side. He is chatty, witty and can ooze absolute self-belief at times, and yet he has struggled with feeling too thin, too short and lacking muscles when compared to some of his friends. He refused to wear shorts during his Junior school years, even when the weather was gloriously sunny and we asked for permission for him to wear jogging trousers rather than shorts for PE – all because he hated the way his legs looked. These days he’s a little more prepared to reveal his legs, particularly when it’s too hot to be comfortable in jeans, but he frequently comments on just how much taller than him many of his classmates are.

Boys can be just as much affected by body image issues as girls can and we’re lucky that our secondary school is very aware of that fact and looks to support all of the pupils in its teaching about these matters. We are all aware that puberty is a tricky time and one that needs to be carefully navigated by all involved. At home, we look to help both G and M grow up with a positive self image and belief as well as teaching them the importance of balanced meals and regular exercise. We also encourage them to talk openly and honestly with us about how they’re feeling about various issues, not just about the way they look, and will help them find answers or solutions if they want. Our youngsters grow up sadly believing all too often that they need to be thin and conventionally beautiful to succeed in this world and I find it devastating that they do not truly understand and believe that there is so much more to achieving success than the way they look.

A pudding for every day

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M’s restricted diet has come with a number of challenges over the years, not least of which is finding some delicious desserts for him to enjoy at the end of a meal. I have worked hard to adapt recipes or create new ones for him, but sometimes all this busy working Mum wants is to be able to pull a pudding out of the fridge and not have to do anything more than remove the lid and provide a spoon. One of the staples of my childhood for weekday desserts was fruit yoghurts and when M was small, he absolutely loved eating a yoghurt whenever he fancied it. G has always been less keen, although she definitely enjoys the odd soya pudding – especially the chocolate ones – on occasion.

So, I’m constantly on the look-out for an M-friendly alternative and you can imagine my delight when my hours of internet trawling uncovered the wonder that are Bio Organic Rice Desserts. Now sadly these puddings are incredibly difficult to source and I have spent a small fortune in shipping boxes of them to our house. However, the chocolate desserts have been a huge hit with Master M and those boxes definitely don’t last long unless a few are hidden away from his immediate view.

18 months ago I came across  La Crèmerie’ and their rice yoghurts at the Foodmatters Live Conference in London and last summer I eventually managed to convince M to give the yoghurts a try. We placed an order for both the plain and the vanilla flavours, but unfortunately  La Crèmerie was low on stock and we had to wait a little while for just the plain yoghurts to be delivered to our door. The rice yoghurt is delicious, although M wasn’t too keen on the plain flavour – I just wish that he’d had the opportunity to taste the vanilla ones as well. However, whilst they weren’t the biggest success we’ve ever seen, they did make a great addition to his smoothies and I was also able to use it to create a stewed apple and yoghurt pudding for him. Sadly, these are another more expensive option and perhaps not one for everyday, but they are a good dairy-free alternative and one I’d happily recommend.

Easter travels

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I thought that time flew by when the children were young, but these days I’m finding it passing even quicker and this Easter holiday has been no exception to that rule. G and M have split their time between Over The Wall and my Mum for the most part as, for Mike and me, it has very much been a case of business as usual during our working week. However, we have made the effort to take advantage of the opportunities created by a break from performing arts and dance classes as well as the long weekend to squeeze in some fun family days out where possible. Despite their seeming reluctance to go for a walk, we’ve found that adding new locations to the mix has made the challenge of keeping our 2 teens engaged much easier and I wanted to share them with you:

National Botanic Garden of Wales, Carmarthenshire – nestled away in South Wales, this is a place that we’ve visited a few times over the years, but it had been a while since we had last ventured in that direction and neither children could particularly remember our last visit there. The Gardens are home to the largest single-span glasshouse in the world, which houses some of the most endangered plants from around the world. M really wants to travel to Australia and whilst that isn’t currently on our holiday plans for the immediate future, he was thrilled to explore the Australia area in the glasshouse. In turn, that led to a very interesting family discussion about where we’d really like to go and revealed those we already knew – Australia for M and Japan for Mike – as well as the previously unheard suggestions of Greenland and Russia from G. On the day we visited there was a display of various bugs and creatures for the children to investigate and we enjoyed the opportunity to chat to the Botanic Garden’s very own “Butterfly Ranger”, which is definitely the best job title I’ve ever heard.

Uncertain of what food might be available on-site we had taken a packed lunch with us, which proved to be the best decision as there was only a handful of gluten-free offerings available in the café. We did supplement our lunch with a portion of chips for the children and Mike to share and took advantage of the tables set up inside the glasshouse to sit inside and enjoy our lunch. Lunch finished, we then headed around the rest of the grounds, although there was a lot more we could have discovered if only we’d had more time. Both children enjoyed stretching their legs, playing in the play area and generally just burning off their energy by running along the pathways. It was a great afternoon out and one we’d certainly revisit again.

Longleat Safari Park, Wiltshire – We haven’t been to Longleat since M was a baby and as we drove past the main entrance en-route to taking G to this year’s South Siblings OTW camp, I thought it was definitely time for a return trip. Unsurprisingly neither child has any memory of being to this amazing estate before and were happy to agree with my suggestion as long as we drove through the safari park (M) and tried our luck in the hedge maze (G). Our visit started with the safari park and both G and M were delighted with all of the animals we spotted on our way round, especially the antics of the monkeys as they clambered across our car roof and down the rear window. Mike had stopped to remove the radio antenna from my car before we entered the park and the children could quickly see the reason why when the monkey on the car in front of us bent their aerial almost in half and started chewing on it! Hunger pangs hit G and M when we were about half-way around the park and so they took the opportunity of sitting in the car to munch on their sandwiches whilst trying to spot lions and tigers…(and bears? Oh no!).

Safari finished, we then headed into the main estate itself and insisted on what was meant to be a quick pitstop for Mike and me to eat our packed lunch before we tackled the challenge of the maze. However, having spotted an array of gluten-free offerings on the café menu, we couldn’t turn down the chance to feed the children a second lunch and so M filled up on yet more gluten-free chips, whilst G enjoyed GF sausages and chips. The hedge maze was a lot of fun and we were surprisingly successful in reaching the centre far quicker than we were expecting. The view from the top of the central tower was incredible on such a beautiful spring afternoon. From there, it was time for a quick runaround the castle play area, a trip to see the koalas and then back to the safari park, this time stopping at the African village near the entrance to satisfy G’s yearning to get up close to the giraffes, thereby unwittingly recreating a photo from her last visit at age 2.5!

Margam Park, Port Talbot – this was our final day out over the Easter Holidays and we picked the perfect time to visit with the glorious sunshine that bathed the country over the Easter bank holiday weekend. It was the first time Mike and the kids had been to Margam Park and both M and G have already expressed a longing to return there in the summer – though I suspect the lure of the Go Ape Rope Adventures might well be the biggest draw. Once again we had taken a packed lunch with us and we found a great picnic table near to the Castle to sit and enjoy our meal in the sun. From there, we wandered around the park: past the boating lake, through the farm and along some of the trails before arriving back at the mansion itself.

M had spotted the go-karts and so we decided to hire 3 -one each for Mike, G and M – who then spent 30 minutes pedalling around and navigating more of the trails, whilst I took the opportunity to wander alongside the lake before finding a bench to sit peacefully and enjoy a little more sun. We rounded out the day with a walk to the Orangery and through the monastic ruins before we headed back to the car.

All in all, we enjoyed some magical days out together and would really recommend all these places for a fun family day out.

Rocky Road

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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!

Pizza and Ballet

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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

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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.

Be my Valentine…and #SpareARose

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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

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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

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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.