Tag Archives: love

Best. Week. Ever.

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Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part  (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1]he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1]And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I menuhad been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1]As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me.  M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.

 

Wanted: One Job

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When this week started, I was expecting the usual end of term mayhem for both children as we gradually wound down towards the summer holidays and close to 6 weeks off school. The holiday child entertainment plans were falling into place with activity weeks, Over The Wall, pony camp and drama school booked to keep them occupied whilst Mike and I put in our hours at work. I had been in touch with Easyjet about our flights to and from Portugal and was well into the process of making sure we can take with us everything we might conceivably need to feed both M and G whilst on our holiday.

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What I didn’t expect was to be looking for a new job.

This week has disappeared into a wild roller-coaster of raging emotions, sleepless nights and a flurry of internet searches, e-mails and phone-calls to recruitment agents, accountancy friends and old contacts to see what leads they might have for me to follow; and I’ve not been able to slow it down enough to get off the ride. When I was told on Monday that I was being made redundant with immediate effect, I was shell-shocked to say the least. Left numb and reeling by the impact this news would have on our summer, but, as the week has progressed, my emotions have broken through the surface and have vacillated between barely veiled anger at my ex-employers, a sense of depression that threatened to overcome everything else and complete disbelief that it wasn’t just a dream.

My post as a senior accountant has disappeared due to a massive change in the personal circumstances of my most recent employers, something we were only told about a month ago. At the time my concerns were whether this change would impact on our work, but was told that nothing would happen for another 6-8 months as they worked out what to do with the business and the client base. I am angry that little more than 3 weeks on from that conversation, I’ve had to deal with the further fall-out and the unwelcome revelation of redundancy without any real warning. I’ll be honest, I had started a little tentative searching to see what was out there as the atmosphere in our office had become tense and untenable, but I truly believed that I had a little more time on my side, time that would allow me to make the decision to move on once again and find the right post for me and the family.

Drawing on the strength that has defined me as an EGID Mum, I’ve got up every morning to get the kids washed, dressed and to school on time, even though all I’ve wanted to do is stay hidden beneath my duvet and avoid the real world. I’ve spent hours in front of my computer screen every day, fine-tuning my CV, searching for available practice and industry roles in the surrounding area and retyping my information time after time after time to complete applications and establish an on-line presence in the recruitment world; before finishing the days too worn out to do anything more than watch mindless TV before collapsing into bed. I’ve taken endless phone-calls from eager recruiters, who are desperate to place an individual with my skill set and have learned to be firm about the type of role I’m looking for and where I’m willing to compromise on my requirements.

Mike and I have taken the decision to keep the news from both M and G at the moment as they need to be able to enjoy their summer without the worry of Mummy being out of work overshadowing their holiday fun. I’ve smiled and chatted and engaged in the classroom and at the school gates, celebrating the end of year excitement alongside the children. I’ve taken M to his first physio session and watched with joy as he finally starts to regain his confidence and is working to rebuild the strength and mobility of his leg, and I’ve joined in and encouraged their plans for their adventures over the next few weeks.

I’m working hard at staying positive. I know that my accountancy skills will stand me in good stead and the fact that I already have 2 interviews set up for next week, with a possible 3rd in the works too, shows me that hopefully I won’t be without work for too long. But, my biggest decision has to be about the direction I follow next with my career. I can, in all likelihood, pick up another part-time job in an accountancy practice without too much trouble, which would be the easy thing to do, but this could be an unexpected chance to make a change. I don’t love working in practice. I’ve been happiest working in industry and that’s what I ideally want to go back to. I want to use not just my accountancy background, but the business acumen I’ve picked up along the way. I am re-assessing the type of company I work for, knowing that the last couple of years have seen a real passion growing for charity work as well as my blog and the allergy world. I have loved all of the opportunities that have opened up with events like the Free From Food Awards and the Allergy Show, and the amazing friendships that have grown through those events. I have an idea for something that I’m sure would be a success if I could just work out how to get it into production, but I need a steady income to allow me to investigate whether it is a real business possibility or not.

At the end of the day, I’m an out-of-work accountant, a dedicated Mum and an enthusiastic blogger and I just want a job that allows me to put that all together in one winning combination.

.

Vigilius Mountain Resort

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IMG_0685[1]Our retreat for those four days away was the beautiful Vigilius resort, 1,200 metres up the Monte San Vigilio in the Italian Alps and only accessible by a 7 minute cable car ride. Mike and I had arrived in Lana, the small South Tyrolean town at the base of the mountain, at around 5pm and headed immediately to the cable car station, where we waited patiently for it to be fixed before we headed up to the hotel. It had been an early start and a long day of travelling, but as we stepped out into the idyllic atmosphere of this peaceful location, all the stresses and strains gently started to slip away. IMG_0595[1]We were met at the cable car station by one of the hotel staff, who offered to give us a brief tour of all the facilities before booking us a table at one of the restaurants and settling us into our room for the evening.

This is an ecologically friendly and sustainable resort, where neutral colours and careful simplicity create a peaceful retreat from the hustle and bustle of everyday life. The rooms are spacious and open, with stunning views of the mountains – the Dolomites and the Alps – on every side. It took a little getting used to the open plan nature of our room, where the bathroom area and bedroom were separated only by a strategically placed small clay wall that gives a slight nod to a sense of privacy. IMG_0524[1]Every room includes a stereo system, but no televisions, though they and DVD players can be provided on request and whilst wi-fi is provided free of charge, it is switched off by 11pm every night creating the opportunity to be as technology-free as you want during your stay. The facilities include 2 restaurants, a library, inside and outside seating areas as well as eternity pool, whirlpool and spa. It really is a place designed for relaxation and indulgence in equal measure.

Our days were wonderfully lazy as long and late breakfasts were followed by time spent alongside the pool or exploring the local area. On 2 separate days we took the single chair lift up to the top of the mountain and followed the well-marked trails to discover astounding panoramic vistas, remote churches and wonderful gasthauses where we enjoyed simple lunches of the local specialities – speck, cheese, fennel bread  – and the occasional glass of beer. We also took the cable car back down to Lana, where we spent some time searching for postcards and goodies for M and G as well traipsing between some of the 40 churches and monasteries to be found in this vibrant Italian market town. IMG_0678[1]This area is bilingual with all signs and menus written in both Italian and German – that 8-week Italian course in the 6th form finally came in handy – and we found most of the people keen to practise whatever English they could.

The resort itself offers a range of activities to its guests, including hiking, mountain biking and other fitness programs, though Mike and I only watched an archery session from afar. We did, however, spend a lot of our time in the pool, sauna, steam room and spa, enjoying the peace and quiet of the mobile-free area as we swam in the eternity pool and relaxed in the indoor and outdoor whirlpools. Thanks to my Mum, I was also able to pamper myself one afternoon with a peel, wrap and full body massage. Two hours later, I rejoined Mike poolside before we headed back to our room to prepare for our complimentary evening aperitif before a late dinner in one of the fantastic restaurants.

Without a doubt, Mike and I enjoyed a fabulous time at the Vigilius Mountain Resort and left feeling more relaxed and rested than we have in a long time. The hotel staff were friendly, polite and helpful and made our stay a wonderful experience. It was a great opportunity to spend time together, without the pressure of having to cope with the everyday juggling act that is the constant needs of the children, work and home. We wouldn’t hesitate to go back to Vigilius again should the opportunity arise and I would love to explore more of the surrounding towns of the South Tyrol.

*Disclaimer – Our 4-day stay at the Vigilius Mountain Resort was courtesy of a competition prize won at the Allergy & Free From Show Liverpool and sponsored by Dr Schar UK. The views expressed in this review are entirely my own and those of Mike.

The Italian Job

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Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

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Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

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Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up. IMG_0522[1]The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

NEAW 2016 – All over for another year

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With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – Teaching the world

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It’s what this week has been all about. A daunting brief when you think about it, something you never expect to have to do, but sometimes life has a funny way of turning all your plans and perceptions and pre-conceived ideas on their head and sending you off in a completely direction to the one you expected to take.

Without a doubt, every new parent looks forward to the journey they’re about to embark on, albeit often with more than a little trepidation about how they will cope and they start with ideas about how they will deal with feeding and sleeping and routines. They might plan to follow in the footsteps of parenting gurus like Dr Spock, or Gina Ford or Jo Frost, after all they’ve read the books and seen the TV shows; or perhaps they think they will take a more relaxed approach, where routine is dictated by the child and everything becomes an opportunity to learn. Of course, you quickly realise that however much you’ve studied the subject beforehand, your baby hasn’t read the same manual and your best-laid plans go out of the proverbial window. No matter the milestone reached – that heart-melting first smile, the scent of your newborn as she snuggles into your arms, the infectious sound of his giggle, 858052_10151297690626123_2130461112_othat quizzical first taste of food or teetering first step – as Mum or Dad you’re there to love and encourage and cheer them on.

When we started our family, Mike and I prepared ourselves to answer their every question as best we could. We anticipated having to deal with the never-ending whys and knew we would need to find truthful words to reply to the most personal questions with simple honesty. We understood our role was to teach them about the world surrounding them, even the unpleasant bits, and equip them with knowledge and understanding and the skills to withstand the buffeting winds that life would inevitably send in their direction. We couldn’t know what storms we would need to weather together

There’s no question that having the responsibility of educating our community about the most precious of subjects is often scary, but it’s one I embrace wholeheartedly and honestly feel that it’s a privilege to have found ourselves in this role. It’s about so much more than being M’s advocate or defending G’s corner, although those form the greatest part of my job. It’s about sharing the lessons I’ve learned and, with that, it has become about explaining to others the nature of M’s chronic illness and the impact it has on our lives. This morning we spent a few hours at our community market, our information boards proudly on display, leaflets ready to hand out, a few bits and pieces placed to try to raise even the odd penny more for Over The Wall and most importantly, a smile on our faces that meant we were willing to answer questions, to explain, to share even the tiniest bit about EGID.

By the time we finally gave in to the cold and the rain, packed up and left, I had spoken to over a dozen people, who wanted to learn a little more and were genuinely interested in what we had to say. Not only had we had opportunity to teach our community, but I found that in response, people had felt able to share their stories and really talk about things that were close to their hearts. A lady whose daughter had been oxygen-starved a birth over 30 years ago and who had sadly lost her last year was able to empathise with the challenges of juggling family life and meeting G’s needs as much as we do those of M. Another woman, who had been diagnosed with Coeliac disease a few years previously, shared her disappointment that those around her still struggled to offer gluten-free options, d5de7-screenshot2014-05-14at20-22-03instead simply opting for something “safe”, but infinitely less satisfying such as fruit or yoghurt to replace the cakes and biscuits they were enjoying. And a family, who had seen our story in the paper and were longing to talk to us about their daughter, who had been struggling with gastro issues, eating disorders, anxieties and food intolerances since she was 11 and even now, at 37, found the medics lacking insight and understanding and unable to help. I don’t know that really I could give more than a sympathetic ear and insights from our own experiences with M, but I also know just how valuable those small things can be.

Have we achieved what we were hoping from this week? I think so. I’m proud that we’ve worked hard as a family to raise awareness of EGID and hope, that in some small way, we have taught our world a little more about it.

NEAW 2016 – The Hidden Truth

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invisibleillness

The Hidden Truth:

“We may not look sick, but turn our bodies inside out and they would tell different stories“

Wade Sutherland

NEAW 2016 – Through the eyes of a child

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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 – I am an EGID Mum

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Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

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This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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NEAW 2016 – Definition of a hero

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image17How 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:

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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.

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!