Tag Archives: friends

Rediscovering Mozzarisella

Three years ago, as this post reveals, I discovered Mozzarisella at the Allergy and FreeFrom Show, which was received with mixed success by my discerning youngest foodie. M enjoyed the flavour when it was added as a topping to his pizza, but he was less certain by its slimy texture and whilst that first block bought was eaten, we didn’t bother buying it again. However, as we head into the third year of M’s heavily restricted diet, he’s become more keen to explore any food that can be considered safe for him to enjoy and has been asking for a retry of this rice-based cheese.

I honestly can’t remember if the range of cheeses was as extensive then as it is now, but I was impressed to discover 6 varieties of Mozzarisella and whilst they can’t all be considered safe for M, there was enough choice for me to pick 3 I thought might make a difference to mealtimes – the original mozzarella-style, the cheddar-style slices and cheese slices with basil. I didn’t tell him I’d ordered the cheeses until the day they arrived in the post and it seemed a sign of success when the parcel reached us on his birthday. He was so excited to unpack the box, treating it very much as an additional and unexpected birthday present, and struggled to decide which type to try first. At the end of the day, it really didn’t matter as all 3 of those choices were a big hit and the sliminess appeared to no longer be an issue.

M’s mealtimes have really been revolutionised, from being able to have “cheese sandwiches” (rice-cakes and mozzarisella cheese slices) in his school lunchbox to cheesy pasta for dinner and we have made a huge stride forwards to him feeling that his meals are a lot more like those of his friends. I’ve just placed another order for more cheese at the great Veggiestuff website and have decided to put their cream cheese alternative to the test too. It might seem like only a small thing to many, but rediscovering Mozzarisella at this point in time has proved a much-needed boost to his flagging spirits, now I just need to revisit and reinvent pizza for him too!

Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

Thermos-inspired lunches

There are 2 things that are promising to totally transform the look of M’s packed lunches for school in 2017. The first is the reintroduction of parsnips to his diet as I’m finally able to cook a crisp-like addition for his lunchbox, which makes them seem a lot more like those of his friends after a long time of feeling so very different. 9270635_r_z002a_uc1440961The second was thanks to a somewhat last-minute Christmas present from good ol’ Father Christmas, which M is absolutely thrilled with and can’t wait to try out now that the new term has started – an individual thermos flask complete with a folding metal spoon tucked neatly into its top.

He’s been considering the matter at great length and has already come up with a long list of meals that he is keen to try out over the coming months. From pasta dishes including lasagne, to risotto and stir-fry, the options are endless, but today’s maiden meal was new-found favourite, parsnip and apple soup. This simple meal is beautifully easy to make, which is something I’m extremely grateful for now that I’m back to work full-time and every second saved cooking is a second gainfully employed somewhere else. Even better, the range of herbs and spices that I can safely add to M’s meals means that I can img_12781create enough subtle flavour differences to his soups to provide some much-needed variety and keep him engaged in the novelty of his first hot school lunches in a long time.

For the launch of our experimental hot meals at school, I made a spicy apple and parsnip soup and included a few of the Rude Health mini rice crackers that have become an integral part of many of M’s lunch and snack times. Whilst nothing can really compare to the unquestionable delight of dipping some crusty French bread into a bowl of rich, creamy soup, the portion of homemade, and safe, parsnip and apple soup accompanied by a handful of rice crackers was everything that M was longing for it to be and that meant it was a resounding success. Over the coming weeks I’m looking forward to experimenting a little more with texture and flavour and will be looking at replacing the apple with pear as well as changing the herbs added to each bowlful. Most of all, I’m hoping that M continues to be excited about the prospect of enjoying a mix of hot and cold meals during the next few months of the school year.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

Giving something back

23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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A Bento Box Journey

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Packed lunches can easily become boring

Have you ever seen a picture of something on-line and be so impressed that you just wish you’d known about it sooner? 18 months ago, a friend and fellow FABED Mum started posting on FB photos of the most incredible Bento boxes that she had been putting together on a daily basis for her daughter’s school packed lunches. Contending with a limited diet as well as other sensory issues, this Mum wanted to create an appealing meal that would encourage her child to eat whilst at school and ensure that she didn’t feel like she was missing out because of her restrictions. On a regular basis, I see updated photos of her most recent creations and I love how she tailors the themes of the boxes to match events at school or in the outside world. I can’t imagine anything better for a child than opening this lunch box at school to discover what food has been included and the theme that has been picked for that day, and I’m sure she must be the envy of many of her friends. To be frank, I’m quite envious as I would love to have these bento boxes for my own lunches too!

 Are you wondering exactly what I mean? Well, take a look at these amazing boxes that have come from N’s kitchen over the last year:

 But why take the time to make your child a bento box meal like these? Without a doubt, a creative lunch may take a little bit of forward planning, but I’m certain that the benefits gained far outweigh the extra time and effort needed each day. Children with food allergies often have an unavoidable sense that they are missing out because they can’t enjoy the same crisps or chocolate or even sandwich fillings as their friends, but when their safe meal can suddenly become as appealing, if not more so, than that of their peers, that disappointment can start to disappear. 12662534_10153359363278176_2469231552454213776_nA child with sensory issues or a reluctance to taste new foods and textures may be tempted to take a bite when faced with a Minion banana or a star-shaped piece of cheese. Of course, there’s no guarantee that your hard work will reap immediate rewards, but as with most things, a continued effort may make all the difference in the long run.

 I just wish M and G were back at the stage of just starting school as I can well imagine how delighted they would have been to eat lunches as inventive as these, but I think we’ve probably passed that window of opportunity, although I am tempted to ask M if he’d like them during his final year of Junior school. As you can see from the pictures I’ve shared above, what helps make the boxes so special is the various pieces of paraphernalia that can be bought online from Bento box company, Eats Amazing. There is an astounding amount of bits and pieces available, from mini cutters to letters and accessories, all there to help turn the run of the mill into a work of art. I suggest that you give yourself plenty of time to discover all that the website has to offer and choose items from themes that will not only appeal, 10629611_10153108516363176_8999877504252818384_nbut can be used on more than one occasion. At first glance, this isn’t a cheap hobby, but by picking a few strategic pieces and taking inspiration from everything that’s available, I am sure that this would be a sound investment for anyone wanting to make their child’s lunchbox something really special. I suspect it would have even tempted my pickiest of eaters when she was a few years younger.

 I am so grateful to N and her family for sharing their bento box journey and showing how a little creativity can make a big difference to a child surviving food allergies and issues in the school environment.

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In the blink of an eye

Despite the numerous hospital visits over the last few weeks – think local hospital…GOSH…local eye hospital…Moorfields…local hospital….local eye hospital….local hospital – this December has been everything I’ve longed for it to be and so much more. For the first December night in a long time, it’s fast approaching midnight Friday and my evening of work is only just beginning. In the last couple of hours, I’ve knocked up a batch of img_12811M-friendly apple and pear cupcakes, a batch of G-friendly vanilla cupcakes and I’m currently struggling with the chocolate brownie sponges that are refusing to be moved from the cake tins. There’s 2 lots of icing to sort out, decorations to be finalised and they all need to be applied to the cakes themselves, but I’m delighted to find myself spending this winter evening like this.

Not only have we broken the December 3rd curse of an admission to hospital, but we’ve also beaten the steady stream of bad luck that has engulfed G’s birthdays for the last couple of years and are getting to spend the day itself at home with our most favourite young lady. Well, I say at home, but of course, the path of G’s birthday never did run quite that smooth, but it’s as close to being at home for the evening as we could wish. It’ll be a day of “work as usual” for us all and our evening plans are dominated by M’s school’s carol service, but we’re all together and that’s something that hasn’t been possible since 2013. All that being said, it does appear that we have created a new December tradition when it comes to G’s birthday and it’s a good thing img_12861that my sense of humour is very much in tact. It was with a wry smile that G and I summoned a black cab to take us to GOSH on Sunday from the train station, not for a visit to a hospital-bound younger brother, but  this time for the final YPF meeting of the year. I’m not sure that Christmas would be Christmas for me without the opportunity to wander the length of Oxford Street on the hunt for last-minute gifts and small stocking stuffers!

img_12881It feels even more special this year as my baby girl, my precious first-born, hits the start of her teen years and all the emotions that those have to bring. In the proverbial blink of an eye, my December 2003 baby is turning 13 and in front of me stands a beautiful young lady, with a little more attitude and grumpiness than I would have chosen, but with a kind heart, generous spirit and the most loyal friendship on offer that you could ask for. She is growing up fast and we are quickly losing sight of the easy-going, chatty toddler that she was as an opinionated, independence-seeking, moody teenager appears in her place. She can slam doors with the best of them and her stomping feet can make it feel as if the kitchen ceiling is about to come down at any moment – and indeed it pretty much has done. These days she brooks no nonsense from her little brother and yet she will defend him to the hilt when it comes to it and is there to comfort and hug even when he doesn’t want it. She’s looking to make sense of a world that often doesn’t and is trying to understand how to interpret the nuances when it would be so much easier if everything was clearer defined in black and white. She can be the much-needed splash of colour in a reality that is all too often dark and depressing and yet will quietly fade into the background when everything gets too intense and too much. She is an incredible blessing to all our lives and we are all so grateful to be celebrating a life that is so much better for the 13 years she’s been an integral part of it.

Happy 13th darling G, we love you so very, very much xxx

Indescribable fear

b6e83c2b62a1e0ec0cd3fbc189efbc94When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.

In November I wrote a blog all about World Diabetes Day 2016 that contained these words:

The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”

not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.

The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.

The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.

The fear that I might never be able to read or write without aids.

The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.

The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.

The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.

The fear that I might not be able to clearly see my beautiful children’s faces ever again.

Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.

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Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.

Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.

So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.

The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.

I am hoping beyond hope that those fears will never be realised, but only time will tell.

Christmas Countdown

The beginning of December has finally arrived. With it comes freezing temperatures, roaring log fires, Christmas trees, pantomimes, carol-singing and, in our household, some frantic last-minute plans for impending teenagehood and a quick anniversary celebration if we can only find the time to squeeze it in. And yes, we perhaps didn’t plan things too well – can you guess that I’ve heard those comments just the odd once or twice before?

These days most children seem to expect a chocolate advent calendar as a necessary part of the Christmas countdown, but what do you do when your child has allergies and can’t enjoy something that’s the same as all their friends? M has asked if we can bake enough of his safe gingerbread cookies for him and G to enjoy 1 everyday between now and the big day itself. It is, without doubt, one of those things that always features highly on any allergy parents’ to-do list at this time of year as it takes some time to find the perfect, safe alternative, but there are some really great options out there and I thought I’d share some of my favourites with you:

And not forgetting one for those much-deserving Mummies out there (it contains gin in case you couldn’t work it out)!

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Cafe Nouveau, Frome

cafeThere’s nothing better than finding a hidden treasure and this small cafe is an absolute gem. We were visiting friends who moved to Frome at the start of the summer and on recommendation from another friend, decided to try out Cafe Nouveau in Tytherington for our Saturday lunch. Long gone are the days of just dropping into a cafe or restaurant and hoping for a safe meal to feed both children, so about a week before our visit I wrote a quick email to the owner, Susan Green initially asking if it would be possible for us to bring a packed lunch for M to enjoy whilst the rest of us ordered from their menu. Much to my delight, Susan replied offering to prepare a cooked lunch for him based on his 5 safe foods and then impressed me further with some extra questions about which herbs and seasonings could be added to his meal to give a bit more flavour. This was already a meal that was sounding like a success and I couldn’t wait for our visit to see exactly how well it delivered.

img_12441I’ll be honest and say that we didn’t realise at first that the entire menu is gluten- and dairy-free, but as soon as we had established that fact, G was in her absolute element. I cannot adequately put into words her reaction when she realised that she could choose anything she fancied and soon settled on a prawn mayonnaise ciabatta with a small side salad and accompanied by her perennial favourite, a soya milk hot chocolate. When we placed our order for her drink, Susan reassured us that because G needed to be dairy-free, she would use dark chocolate powder to ensure the drink was completely safe for her. They had a fantastic range of alternative milks and milk-based drinks on the menu, including almond, coconut and soya milk as well as some cows’ milk for those customers who don’t want to try something different. We were told that the cows’ milk is kept separately and different containers used depending on the milk used. img_12451M was keen for G to try the “Vanilla Soya Frothy”, which I assume is a vanilla milkshake, but G was determined to indulge and stuck resolutely to what she knows she likes.

Mike and I both decided to take a look at their specials board, which is updated I believe on a daily basis and contained some delicious sounding dishes. I checked to make sure that their soup of the day didn’t contain potatoes and chose the chicken soup with a gluten-free roll on the side. Mike opted for their daily special of a spinach-filled chimichanga, which img_12461Susan mentioned was a fairly small portion and so added the Mezze plate, which included houmous, olives and some delicious seeded crackers. The plates, when they arrived, looked wonderful and the food was absolutely delicious. My soup had that real home-made feel to it, was packed with chicken and tantalisingly fragrant in its flavours. I was impressed with the gluten-free bread, which we were later told is baked off-site in a img_12431bakery that has an exclusively gluten-free area to make sure there is no cross-contamination risk. G’s sandwich soon disappeared and her hot chocolate didn’t last long either! As for M, he was thrilled to receive a healthy-sized portion of plain rice, topped with 2 roasted chicken thighs and some apple and ginger purée. He was a little disappointed that they didn’t stock any rice milk for him to drink, but was happy with the cartons of cloudy apple juice that were on offer instead. We were all delighted by our fantastic meals, little realising that the best was yet to come.

Anticipating that there wouldn’t be much on offer for M as a dessert, I had brought some safe snacks with us for him whilst the rest of us enjoyed a pudding. For the first time ever in her life, G had the chance to experience something that is commonplace for all her friends. She and I went to the counter, where an impressive array of cakes, cookies and other sweet treats were on display and she could eat every single one of them. That is a treat that is absolutely priceless and I loved seeing her struggle to pick just one item to enjoy after her lunch. There was chocolate cake, Victoria sponge, reduced sugar apple cake, flapjacks and some amazing-looking bite-size vanilla and nut ball treats. G finally settled on a toffee popcorn cookie, whilst I savoured a slice of the Victoria sponge.  Neither stayed around long enough for me to snap a photo, so I’m afraid you’ll just have to imagine how wonderful they looked. We were so impressed with the selection that M helped me choose a few to take with us for afternoon tea at our friends’ house and was particularly keen that the man of the house had the chance to taste the allergy-friendly chocolate and orange torte.

Cafe Nouveau really was a most remarkable find and one that the whole family would happily recommend to anyone eating out with food allergies. It is part of a very small development on the edge of 30 acres of parkland that also includes 4-star Bed and Breakfast, The Lighthouse. Susan and her team open the cafe from 7am to provide breakfast for The Lighthouse’s guests as well as other customers, something that I absolutely love as it would save the need to pack boxes of cereal and cartons of safe milk on our travels.

Our marks: 9.5/10