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NEAW 2016 – Through the eyes of a child

Last year M decided to create a presentation that he could use to explain EGID and his feeding tube to his school. He and G worked together to produce a video telling the story of the first 9 years of his life, which they then showed to all the classes and took part in 8 separate Q&A sessions to help their peers understand more; something they did with great success. This year my dynamic duo took on the challenge again and decided to work on something completely different. M worked hard to write a story looking at EGID through his eyes, which G then illustrated and, with a little help from me, they have made a video that reflects their understanding of his chronic illness. M has again shown the film at school, although this time it was used in today’s whole school assembly rather than shown to each class in turn. Our aim was to explain EGID in a way that children would completely understand and hopefully would enjoy. We really hope that you enjoy it as much as we loved making it and please share it on to help us raise as much awareness as we possibly can.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

NEAW 2016 – Definition of a hero

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How do we define a hero?

The dictionary definition describes a hero as “…a person, typically a man, who is admired for their courage, outstanding achievements, or noble qualities…“, but personally I prefer the description given by Christopher Reeve. That man, best known for portraying iconic superhero Superman and his unparalleled physical strength, had to learn to develop a mental strength of epic proportions when faced with the devastation of complete paralysis following an accident that changed the direction of his life in the proverbial blink of an eye. He truly became an individual who persevered and endured and succeeded despite the obstacle of his impaired health and he willingly lent his voice to the campaign seeking a cure for spinal cord injury as well as improving the quality of life for those living with paralysis. An amazing and inspirational man.

Last week’s Invictus Games gave us a glimpse of a different set of heroes, who have survived, and continue to survive, against the most unbelievable odds. Their stories bring a tear to the eye and a lump to the throat and are more than enough to inspire you, and their determination to live life to its fullest is simply awesome to witness. These servicemen and women have taken the tragedy of mental and physical injury and turned it into a stepping stone to reach a new goal. Be they athletes or members of the Invictus Choir, their courage in overcoming challenges that most of us can’t even begin to imagine, as well as being prepared to share their struggles in the public eye, makes them a great inspiration for anyone facing their own silent battles.

So, it seems that M’s recent homework came at an opportune time. He was asked to think of a person who inspires him – famous, family member or friend – and come to school prepared with a picture and a 1 minute presentation explaining what makes that person inspirational in his eyes. With so many varied choices out there, I was intrigued to find out who he would choose, fully expecting him to struggle to decide and wanting to see if his final selection would give me an idea for a blog during #NEAW16. I’ve got my blog post, and it turned out that I was wrong as M knew almost immediately the person who inspires him and the reasons why. This is what he wrote:

Finley, who is nearly 6, is one of M’s #EGID and #GOSH friends and is unable to eat anything. M often talks about Finley: the uniqueness of his chronic illness and his ever-present smile despite the challenges, so it came as no great surprise to me that M finds him inspirational. For M, Finley is the definition of an EGID hero; but he’s not the only one. We have come across hero after hero in our contact with our extended EGID family, including those young people and adults who, in the way they live their lives, are giving my son something to aspire to and showing him that he can achieve the goals he sets for himself. We’ve celebrated with others as their loved ones have achieved exam success, received college or university places and started out on new careers. Sharing these milestones within our EGID community reflects that these are families like ours, who are trying to make the best of the situation they find themselves in and using their own experiences and successes to encourage and help others whenever they can.

For me, the best response to M’s homework came during his last Stagecoach session as he described Finley to his singing teacher. That lovely teacher turned to my boy and gently said, “You are one of the most courageous and kind-hearted children I know. That reason you’ve just given me for why you admire Finley, is the very reason why you inspire me. Despite everything you cope with, every week without fail you turn up here and have a cheeky smile on your face that cheers me up and makes me smile.” And the look of quiet pride that slowly spread across M’s face as he absorbed that compliment told me everything I already knew: that in his own unique way, M also embodies the very definition of an EGID hero.

NEAW 2016 – #MoreThanFoodAllergies

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The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Of course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with ‪EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way. The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway. The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to. The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

We’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

The 12 day countdown…

A Power of Superheroes

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What is the collective noun for a group of superheroes? Any idea? I didn’t know off-hand, but as I looked around the room at the amazing group of people gathered to celebrate the 2016 Free From Foods Awards this week, I realised that that’s what I was in the midst of: enough superheroes to make any allergy sufferer’s heart flutter. Ever since I spent a fabulous 2 days judging these amazing awards at the start of February, the ceremony had promised to be the highlight of my season and, with M and G in their new role of diary contributors to the Foodsmatter newsletter, the whole family was lucky enough to be invited to attend.

13095812_10153421370696123_3435156642706845396_n M’s broken leg required some significant amendments to our original plans, but we were determined to get the family, wheelchair and all, to the event, held near Regents Park, London at the rather impressive Royal College of Physicians. We planned to leave as soon as the children finished school, which left ample time to reach our destination and even allowed strategic stops along the way to primp and preen ourselves for the evening. We all had new clothes for the occasion and G took the matter so seriously that she hand-wrote a note for her hanger to remind herself not to wear them before the day itself. Our journey started well and as we travelled along the motorway, the children took turns to pick songs for us all to sing or compared what cloud creations they could spot out of their respective windows. Naturally things couldn’t continue in that relaxed manner and we soon joined a queue of stationary traffic that had me biting my nails and stressing to the hilt that we wouldn’t reach London in time. Fortunately for all concerned, Mike has a much calmer Cg-yOG8WIAAwdZY head than me and was our nominated driver for the night. The traffic eventually started to move, we crept past the accident site and soon were back up to speed and on our way without me completely losing my cool. We stopped just once and Mike, G and M were all able to nip into the service station toilets to glam themselves up for the evening. I was too anxious about our timings to take 5 minutes out to change myself and the following hour or so was filled with moments much reminiscent of Dirty Dancing – remember Baby changing on the back-seat of Johnny’s car? – as well as hysterical giggling from M as I contorted my body into unbelievable positions to don my own new outfit.

Of course, as it turns out, I needn’t have worried. We arrived bang on time and thanks to the helpful College staff, we were able to park in their car park to ease the burden of manoeuvering M and his wheelchair around. Convoluted lift systems negotiated – seriously complicated as we had to go down from the ground floor to the lower ground floor before taking a different lift up to the first level – we were finally there and the children were thrilled to receive name badges of their very own. From the moment we stepped into the room, I was surrounded by a group of innovative, interesting and fantastic people who all had one thing in common, their passion for the freefrom market. Some of them I had had the honour to meet at one of the judging sessions, others I know from social media, whilst others I’d never met before, but as we made our way across the room, being hugged and kissed by new friends and old, I realised that I really did feel at home with them. We parked M’s wheelchair close to the stage so that he could observe all the proceedings with ease and my thanks go to the Romer Labs UK representatives, one of the Awards sponsors, as they made sure he could see what was happening at all times.

Michelle Berriedale-Johnson was the emcee Cg_buJJW4AUTEpI for the evening and the awards presented by celebrity chef, Antony Worrall Thompson, who gave what has to be the quote of the night that “..free from people should not be seen as niche people but normal people..”, which was great to hear. It was wonderful to see so many creative and innovative producers receive commendations for their hard work and the winners were all deserving in their categories. It was good to remember some of the fantastic new foods that I had tasted and wonderful to see G so excited about the gluten- and dairy-free offerings available that her own mini fist-pumps could be seen as she heard who the winners were. The full list of winning entries can be found on the Awards website, but a special mention must go to the winner of the FAIR trophy for the Best FreeFrom Food 2016, Nutribix. I was particularly thrilled to see this breakfast cereal win, not least because I had been fortunate to judge the Breakfast products category in February and absolutely loved it. Nutribix is an amazing product, reminiscent of Weetabix and unlike anything else available on the freefrom market at the moment. nutribix-awt-mmo We’ve still to track down a box in our local supermarkets for G to try, but I’m even more determined to get my hands on some now that one of my favourites has won the overall title.

It was an unmissable night and we could easily have stayed for hours chatting to the other attendees. G and M were on best behaviour and did some impressive networking of their own – politely introducing themselves and chatting confidently to the adults in the room. I received several compliments from those they spoke to, which makes me immensely proud. G was absolutely buzzing from the thrill of having canapés and a buffet that were, more or less, all safe for her and certainly enjoyed the food – the surprise hit of the evening being water buffalo canapés which she declared “delicious” and helped herself to more as soon as she could. It was wonderful to have the time and opportunity to put faces to names of so many other allergy bloggers and companies out there and whilst I won’t even attempt to list them all for fear of forgetting someone, they know who they are and I can’t wait to the next opportunity to meet up. The free from community can sometimes be surprisingly small, but it is also very close-knit and these are people that I’m delighted to be able to describe as friends. Even better, we already have a date in mind and many of us will be able to reconnect at the Allergy and Free from Show at Olympia, London during the weekend of July 8-10th. There’s also the Free From Eating Out Awards coming up later in the year, which is looking to recognise nationwide chains as well as independent restaurants who go the extra mile to provide safe meals for their allergy-suffering diners.

Special mention has to, of course, go to our very own superhero, Ryan from Borough 22 doughnuts. He got one of the loudest cheers of the night, partly aided by our very exuberant family, as well as 2 very much deserved Highly Commendeds for his doughnuts. The highlight of M’s evening was meeting the man he now terms his “personal chef” and even more thrilled that Ryan signed his cast too. It says a lot about the difference this man has made to M in such a short space of time that today even his teacher understood why M was so excited to have met “the doughnut man” in person.

Oh, and I still don’t know what that collective noun is, but I rather think “A Power of Superheroes” fits the bill perfectly! MzQ1QzM3M0E4MzFCNjM4QjYzMUY6YWUxNzkyMGNiZWRkMjJhNGIyYWI2YTNlNDZiNGJjODM6Ojo6OjA=

Allergy Awareness Week 2016

“Barry Broken Bones”*

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It’s currently 5.10am and I’ve been sitting awake on the surgical ward of our local hospital since M woke in extreme pain at around 3.15am. He has finally dropped back to sleep, but it looks like I’m going to be surviving the next 24 hours on just 3 hours of unsettled sleep. The last 24 hours have passed in a blur and certainly our day didn’t end as it started out. big-play-barn We’re halfway through the Easter school holidays and, with my Mum on her travels once again and me committed to work, Mike has taken some time off from his job to be on childcare duties for the duration.

The plan for the day was a popular one with M and G alike – drop me off to my office, back home for a quick breakfast, packed lunch prep and bag pack, and then head off to a nearby play place and farm – one of M’s all-time favourite places to visit when time allows. Day out done, it would be home for a spot of homework and maybe some TV before the return journey at the end of my work day to bring me home just in time for dinner. Timed to perfection, it promised to be a fun, busy and productive day for all concerned. The first I was aware that something untoward had cropped up was the phone-call to my office during lunch-time. A phone-call from G. The type of phone-call no parent wants to receive out of the blue:

“Hi Mum, it’s me. Dad just wanted me to call and let you know we’re having to take M to hospital…”

Cue vivid flashbacks to a sunny day in Cornwall when M was 4 and the sounds of G pounding on the car window whilst Mike carried a screaming M in his arms and the ensuing drive in something of a blind panic to the nurse-led unit at Bodmin before an ambulance trip for 2 to Truro.

The partial facts I was able to extract from her at that point told me only a fraction of what I wanted to know, but it was enough to cause my heart to lodge itself in my throat and remain there for the rest of the day. With the news that M’s leg had been hurt and needed to be checked in A&E, the remnants of my lunch were pushed to one side and I worked hard to suppress the anxiety that I could feel creeping up in an attempt to catch me unaware all too frequently. I spent the rest of my afternoon in a state of mild shock, feeling nauseous about what might have happened and watching the minute hand tick slowly by as the tension started to build. It didn’t help that neither my office or our local hospital has great mobile phone signal meaning that it was near impossible for Mike and I to communicate in any effective fashion. I did manage to somehow stay focused enough to complete my day and finish some work during those long waiting hours, though the quality, accuracy and sense of that work will only be revealed once I’m back there. After what felt like hours, I finally gave in to my anxieties and called A&E, where, by complete chance, I managed to catch Mike just as he was about to leave with the children. Despite M’s severe pain, the nurse assessor felt confident that the lack of swelling and no discernible sign of a break on thorough examination indicated it was just badly bruised and some judicial doses of painkillers would soon see him back on his feet.

Now, the fact that I’m currently writing this by the light of my phone on a noisy hospital ward will probably tell you all you need to know and that the story didn’t end there. Not even close. By the time, I had been rescued from my office and we reached home, M was unable to put any weight on his foot and was screaming from the excruciating pain. He was rating his pain levels at approaching a 10 out of 10, which we knew meant this was far more serious than originally thought and his pale, strained face reflected that fact. IMG_0301[1] With very little debate and a hurried phone-call to A&E, we were soon back in the car and heading to the hospital, this time determined not to leave without an x-ray. The nurse assessor admitted on the phone to Mike that she had been reflecting on M and regretting discharging him without an x-ray, so for once we were happy to be visiting our local A&E again.

Within the hour, and obvious from the very first x-ray, we had our answer: M has a nasty spiral fracture to his left tibia. That has led to a full length leg cast from mid-thigh to toe, a considerable amount of tramadol, paracetamol and ibuprofen and an overnight stay for 2 on the surgical ward for observation. It’s been a difficult night as once again G has been sidelined whilst M heads into hospital, though this time the proximity to home has made it so much easier and she has been a superstar throughout. M’s pain has reached new levels of awful, though even then, as he lay sobbing in his hospital bed, he wouldn’t rate it as more than a 9, or possibly a 10, proving once again how accustomed to chronic pain he has become.

IMG_0302[1] The next few weeks are going to be tough and not just because of his broken leg. M is going to have to find a fortitude he’s never had before as he misses out on a much longed-for dream because of it. He is extremely disappointed, but courageously trying to take it in his stride, with the smile on his face we all know and love. I can see the hurt deep in his eyes, but we will hope that something even better comes from this disaster. What saddens me even more is that he really has been the victim in this situation. His broken leg is not due to careless or reckless behaviour on his part, but down to the action of another child. A child who probably has no idea of the physical damage to M’s body, let alone the other far-reaching consequences of his violence towards my child. I’m still reeling from the shock that a child of a similar age could cause such injury; disturbed that a family could leave without checking on his well-being and left hoping that my children don’t lose their beautiful skill of making friends of strangers wherever they are, even though the consequences can unbelievably be so devastating. I fear that this incident will leave an emotional scar on them both that will take a long time to heal.

*M’s leg might be broken, his dream in tatters and his confidence knocked, but at least 1 thing is still in tact – his sense of humour. In the wee small hours, whilst floating on a cloud of entonox, M decided that this needed to be his new name! That and he’s keen to investigate the price of a cow…

Over The Wall

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It was last summer when I first heard about Over The Wall and the amazing camps they run across the UK for children with serious health problems. M’s GOSH and EGID friend, R and his big sister, I otw were fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.

Over the Wall is a UK-based charity that is part of the international SeriousFun Children’s Network, which is based on an original idea set up by actor Paul Newman in the 1980s. He identified that the popular US summer camps attended by thousands of American school children every year often left out children living with chronic health conditions because of the inability of camp volunteers to cope with the often complex medical needs. His vision was to open up that opportunity to every child, regardless of their health needs, and he helped to provide full support for every child whilst they were away from home. These children got the full “camp” experience as they were unaccompanied by parents or carers and were able to enjoy a touch of “normal” in their otherwise complicated lives. From that simple starting point, one camp spread across the US and into countries across the world and soon followed the realisation that not only did the sick child miss out, but so, all too often, did their siblings and the idea for a separate siblings camp was formed.

I was delighted to learn about the siblings camp and, feeling that this was another great opportunity for G to escape the constraints of a sick sibling and be surrounded and supported by others in the same situation, duly applied; and so it was that a couple of weeks ago, G headed off to deepest, darkest Dorset for a week of serious fun. Just as her Young Carers group gives her the opportunity to have time away from M with other local youngsters in similar supporting roles, G spent the week with other 8-17 year olds from across the South of England and Wales, who all have 1 thing in a common: a brother or sister living with a chronic health problem. It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.

The children who attend are split into 8 groups: 4 colours determined by their age, with orange for the youngest and blue for the oldest; and then each colour split into separate boys and girls teams. Volunteers are a key part of the camps and their numbers match camper numbers, so for the 60+ children on the 2016 South Siblings Camp, there were 60+ volunteers supporting them, encouraging them and making sure they had fun. During the week the teams participate in a number of activities, from swimming to archery and from climbing to arts and crafts and much, much more. Their days are carefully planned with breaks and an after lunch rest hour, which G tells me was strictly adhered to, as well as a cabin chat every evening, where the teams reflect on their days and every member is awarded a bead to recognise what they’ve achieved. Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.

G’s enthusiasm about her time on camp has been wonderful to hear and she was keen to teach M the camp songs and share so many snippets of everything she got up to whilst there. I love the fact that there was little or no discussion about their chronically ill siblings, but instead the focus was well and truly where it needed to be – on these children who all too frequently miss out. I was impressed with the array of meaningful mementoes that G brought home with her, as impressed as she was delighted. More than just her purple OTW t-shirt and a black one for M, but also a carefully crafted wooden bird-box, team and camp photos, a hand-print card holding the reflections of the team – both peers and volunteers – on who G is as a person and why they appreciated her, and that precious collection of beads reflecting her achievements during the week, recognised by her team volunteers and accompanied by a written record of why they felt she had earned them. All of these things have built up her self-confidence in those few days away and have helped her feel even more valued within this new group of friends.

For us, it was an unnaturally quiet week in the household and there was a definite sense of something missing from our every activity. M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.

As a parent, you know you’re on to a good thing when you child asks for more and G has already asked if we can apply for her to go again next year if at all possible. Her enthusiasm about her experience has bubbled over and infected the whole family with M now having everything firmly crossed that his application for a place on the August Health Challenges Camp is successful. That would see him having those same opportunities to enjoy as G in an environment that we can be confident will be safe for him as there are medical volunteers and 1-to-1 support for the chronically ill children. Even better, the children have decided to make OTW the focus of their fundraising efforts during National Eosinophil Awareness Week this May. The one thing I haven’t mentioned is that these camps are offered completely free to those children who attend, making them truly accessible to all, which is a really fantastic part of this charity. Any funds that G and M can raise will help make a huge difference to others like them and if you’d like to make a small donation, you can do so via this link or the button on the right, with our thanks.

Family Storytellers

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During my judging stint at the #FFFA16 earlier this year, I got chatting to the lovely organiser of these awards, Michelle about the possibility of an ongoing working relationship between the organising body, Foodsmatter and 7Y2D. Always keen to promote my blog through any networking opportunities out there, I was as enthusiastic to explore the options as Michelle and eager to see where it might take us. One of the ideas we discussed was the introduction of a new diary looking at EC and food allergies on the Foodsmatter website and newsletter, to run alongside the well-established Coeliac and Allergy ones already there. Michelle proposed a different twist on the subject and asked if I thought G and M would like to write these regular entries to give a child’s perspective on life with food allergies. It didn’t take long for me to accept on their behalf, even without discussion, as I knew M in particular would leap at the chance to get his views out there, especially after his tube-feeding contribution to “Complete Nutrition” at the end of last year.

When I got home, M, G and I discussed at length this request and all its implications. Whilst both were as eager to agree immediately as I expected, I needed them to fully understand the commitment they were signing up to and reminded them that if they then decided to go ahead, I would be making sure that they kept to it every step of the way. I was keen to see G and M take up this fantastic opportunity for so many reasons and felt that with some focus they could really make something valuable of it. Both children are quietly fascinated by my blog and I have never hidden from them that I’m writing it or the reasons why. From time to time, one or the other will ask me to “..take a photo for your blog Mummy..” or “..will you be writing about this?..” blog I know that M occasionally takes a peek at what I’ve been writing and G has expressed a passing interest in getting more involved at some point too. Writing these diary entries for the Foodsmatter newsletter would give them a voice to express and explore their own attitudes, opinions and feelings about life where EC and food allergies are ever-present.

However, I strongly believe that there is much more to be gained by them than simply sharing their experiences with a wider audience and, as important as that is, these other life lessons have great value and will teach them well for their futures. The original proposal was for them to work in collaboration to produce a monthly diary entry to be included in the newsletter. They will have to learn to work as a team, sharing ideas, taking turns to write it down and, most importantly, listen to and recognise the value in each other’s opinions. I stressed that there would be no bad or wrong ideas about what each post should be about, simply thoughts that might need discussing and refining without argument or insult. 284454_10151027743256123_703224883_n Some months their entries might be a joint effort and for others, one might end up taking the lead with little or no input from the other, The responsibility of monthly articles is theirs, and theirs alone – I will not be stepping in if they leave it too late or can’t agree on what to write.

Having committed to writing every month, G and M need to make sure that they meet their deadlines and have an article ready for me to review and send before the publishing date. This requires a level of organisation that, for the time being at least, I will be helping them achieve as well as gently nagging them if the deadline is creeping ever closer. I suggested making a list of possible subject areas they might want to cover in their diary entries and reminded them that preparing this would mean that they could, if either was so inclined, get a head start and make notes for a future piece, thus saving themselves stress and heartache when time is running short. Flexibility, of course, is key and ideas can be shelved for a future edition if something more interesting, or relevant happens that they want to comment on instead. After 3 years of writing my blog, I know well the difficulties of having little to say when I want to post a new piece and how having something simmering in the background is always a real blessing at those times.

Most excitingly for me is waiting to see just how their writing voices and styles develop over time. M, despite the challenges of his dyspraxia and dyslexia, has never struggled with his imagination and is able to dictate fascinating stories that are filled with his character and sense of humour. In comparison, G has always found literacy a difficult topic to conquer and despite her breadth of reading and extensive vocabulary, struggles to express herself in the written word. I’m hopeful that the experience of writing this diary will help them both achieve more than they ever thought possible when it comes to their writing skills. If the giggles that floated downstairs to Mike and me as they wrote their first piece together are anything to go by, they really will enjoy this opportunity and I look forward to reading more from both of them.

For a taste of their contributions so far, you can read their entries for March and April here:

The diary of Galaxygazer and Marvin

And if you enjoyed those and want to keep reading on a regular basis as well as other great articles, you can sign up to the Foodsmatter newsletter here

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

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