Tag Archives: special needs parents

You know you’re an Allergy Mum when…

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I often flick through those “You know you’re a…” memes and have a quiet giggle to myself. I love the funny images that reflect the reality of a certain situation and I’m happy to admit that I do have a sense of humour about the jokes that poke gentle fun at the world’s response to the seemingly meteoric rise in food allergies in the past few years. In my opinion, and I willingly accept there will be many who don’t agree with me, life’s too short to not be able to laugh a little and find humour in what can be incredibly challenging situations. I know how difficult life with allergies can be and that ability to smile in the face of adversity is often what gets me through the hardest of times.

The truth is that when you’re an allergy parent you never really get the day off, which is why I found myself having to write this post in the midst of relaying tales of our recent trip to New York. It was a holiday to celebrate my milestone birthday and yet, just as I did when we had our short trip to Italy last year, I found myself snapping photos right, left and centre img_3430whenever I came across any food or drink that would be suitable for either of the children. The thing is that for once in my life I wasn’t actively looking for safe food options, but the discovery of that first gluten-free sandwich triggered a level of excitement that would be completely incomprehensible to anyone other than those walking the very same journey that we do. And no sooner had I discovered that first little gem, than I started looking everywhere to see just how well G and M would be catered for should we find ourselves in the Big Apple in the next few years.

Our trip to see the most well-known lady of the USA was also the site of this unexpected windfall in meeting dietary requirements. Having climbed our way to the top of the Statue of Liberty, we headed on to Ellis Island, where we decided to stop for lunch before exploring everything on offer in this former immigration inspection station. We had opted for a burger each as it was a cold and wintry February day and whilst Mike was placing our order at the counter, I took to the fridges to pick out our drinks. img_1449There, nestling amongst the other cold food options available, was this amazing gluten-free ham and swiss cheese roll and I was so impressed that I just had to take a snap. I’ve commented so many times on how difficult it can be to locate the gluten-free offering in cafes and coffee shops in the UK, so to discover this one so prominently on display and clearly labelled was just fantastic. Obviously, I really can’t comment on whether it tasted good or not, though I can assure you that the burgers Mike and I had were delicious, but to even have the option so readily available was a real breath of fresh air.

From that point on, my eagerness to see what other allergy-friendly offerings were available was back to its normal level and whilst I didn’t actively seek out restaurants that could serve freefrom alternatives, I kept my Allergy Mum eagle eyes on red alert to see what I could spot on our travels around this vibrant city. Our quick stop at Eataly to find a drink and small snack after a long afternoon at the 9/11 Memorial museum revealed some sheep’s milk and cheese for those looking for dairy-free alternatives, but disappointingly we couldn’t spot any of the gluten-free goodies we had unearthed on our Italian trip last year.

I didn’t spot many allergy-friendly menu items as we ate out in several of the many restaurants on offer, but we were delighted to spot a couple of gluten-free options at what was, without a doubt, my favourite restaurant of the trip. The fantastic Ellen’s Stardust Diner is a 50s themed diner that combines classic all-American dishes with amazing live entertainment. As you sit to enjoy your meal, you are serenaded by your talented waiter or waitress and their fellow servers. The staff members are all looking to break onto Broadway whilst working at the diner, which understands not only their need to supplement their income and take further performance classes, but also allows them to accept those last-minute audition opportunities whenever they appear. The food is good, but it’s the staff who really make this a dining experience like no other. Discovering a couple of gluten-free meals was a real treat, though I’m not sure they could really cater for the more complicated needs of a certain young member of our household.

However, our best finds came on a very wet, grey and miserable Monday afternoon as we trudged across the city towards the Intrepid Sea, Air & Space Museum. We needed to grab a light lunch before we reached our final destination and, as Mike had been hankering for a proper bagel New York-style, stopped at 2 unassuming locations to find what we had been looking for. As well as eventually finding a great deli serving some delicious lunch foods, we also discovered a veritable Aladdin’s cave of freefrom goodies. From the unbelievable number of allergy-friendly cereals, bread, frozen foods and milks on sale at the impressively named Food Emporium on West 43rd Street and the added delights of camel milk and coconut or almond milk ice cream at Sunac Natural Market on West 42nd Street, there was enough to satisfy the cravings of even the pickiest of allergy tourists. There may not have been a huge variety of options for M, but we did find some great and different types of rice for him and I know G would have been hard pressed to choose from the wide selection of gluten- and dairy-free foods that we found between these 2 great spots.

And so, in the tradition of all those Allergy parent memes that are out there….

You know you’re an Allergy Mum when your holiday photo album looks like this!

 

New Year Resolutions

Two weeks into 2017 and, for some, their good intentions may already be beginning to waver as the grey skies, endless rain and post-Christmas blues sap away any enthusiasm that might have existed at that moment of pressure when they were asked by a well-meaning friend or work colleague what their New Year resolutions were. Love them or hate them,newyearsresolution you’ve probably got an opinion of them, even if it’s just that they’re not worth doing as only the very few manage to keep to their chosen goal.

Last year, Mike and I both had resolutions, though of very differing types and whilst I was fully aware of what Mike was planning to do, I set myself a goal that I chose not to share with anyone. Mike’s resolution for 2016 was to extend his previous challenges of giving up alcohol during Lent by trying to be dry every other weekend throughout the year. He sensibly took the approach that there would undoubtedly be occasions when he would want to drink 2 weekends in a row, so was flexible in managing it, sometimes choosing to abstain for 2 weeks before drinking for 2 weeks. It seemed to work well and he was delighted that he reached the end of the year having managed to stick to his resolution for the full 52 weeks.

In comparison, mine was a blog-based goal and one that I was secretly hoping to achieve and would monitor throughout the months to see if I was still on track to succeed. The one thing I love about the blogging platform that I use and something that really appeals to my accountant’s heart, is the statistics I can access and drill into on a regular basis. As well as showing me my daily hit rates and what posts are proving particularly popular, I can also compare and contrast my monthly statistics and averages since I first started writing nearly 4 years ago.  In my first 10 months, I achieved nearly 6,000 views, whilst the following 2 years saw me hitting the heady heights of over 11,000 blog post reads over the year. Last January I decided I wanted to break the 12,000 mark and set myself a target of 1,000 hits a month to reach it. Some months it was close with the lowest read rate being 1,030 in March, whereas other months were hugely successful including a 2016 high of 2,396 in August. My year-end goal of 12,000 was well and truly met and I can confirm Successthat I actually achieved over 16,000 hits in the year, something I never really thought possible when I started blogging in 2013. I haven’t set myself a NY resolution for years, so it was a fantastic feeling when I finally passed that last 1,000 mark in December and could quietly pat myself on the back.

This year our household has taken something of a mixed approach to the whole matter of resolutions, being firmly split between 2 distinct camps: those who do (Mike and G) and those who don’t (M and me). I’m not going to publicly share the resolution decisions of my loved ones at this stage in the game, though I promise to let you all know if they manage to achieve what they’re planning to do as and when they reach their end goal. As for me, well it’s not strictly true that I haven’t set myself a resolution, but rather a year’s goal that is to successfully juggle the new pressures of blog writing, awards judging, T1D managing, parenting and full-time working so that I can do enough in each area and hopefully fail at none. My focus is having to be sharpened at the moment to ensure that none of the balls is dropped and I guess only time will tell how successful I can actually be. Of course, I will undoubtedly share my progress on my blog.

How about you? Have you started 2017 with a resolution or goal in place? I hope that if you have you’ve managed to keep it so far and that you have continued success with it!

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The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

Summer Bakes

tumblr_static_wendy2The first 3 weeks of the summer holidays were filled with clubs and camps and activities and I needed to create some M-friendly bakes that could be packed into a lunch-box or, in the case of
Over The Wall, included as a bedtime snack to share during the evening cabin chat session with the rest of his team. With M’s tally of safe foods still stuck at 5, I wanted to bake something new, something we hadn’t tried before, and where better to start than a quick search using my trusty internet search engine. There are not many recipes out there that incorporate those safe ingredients only, so I looked for some vegan and gluten-free suggestions and decided to do the rest of the tweaking myself where necessary.

The first recipe I found was for Pear blondies, a vanilla version of the ever-popular chocolate brownie without, rather obviously, the chocolate and I was intrigued to see if this could be made for M. Using apple purée as my egg replacer, I stirred my mix and then kept my fingers crossed as the small cakes went into the oven. The smell as they baked was amazing and, as always, a certain young gentleman appeared alongside me as I pulled the final product out, ready to cool. The quantity was enough to make a dozen bitesize blondies, which were perfect as a snack during his busy days. Both children enjoyed the blondies, with IMG_0762[1]M particularly keen on the small chunks of pear that had become melt-in-the-mouth and golden as they baked in the sponge mix.

My second new baking venture were Pear and Ginger cookies, which seemed to me to be a perfect combination of sweet and spice, something I was sure M would love. This was another easy recipe to whip up, made from the staples stored in my kitchen cupboards. The dough made an impressive 18 cookies and within minutes of them hitting my cooling rack, my hopeful duo found something important to do in the kitchen in the hope they might be successful in picking up a stray biscuit as they passed. However, whilst they were tempted to taste one straight from the oven, the lure of the lemon icing to be drizzled when the cookies were finally cooled was enough to gain me around 20 minutes extra before my store started to be depleted. These were an amazingly good bake as the rice flour didn’t make the cookies taste granular at all and the ginger was subtle enough to give a little extra heat without overpowering the sweetness of the pear. The children were both big fans of this bake too and I was intrigued to see which one M would settle on as his final choice for taking to OTW camp. In the end, much as he loved both of these new treats, he decided the pear and ginger cookies would be his cabin chat snack of choice and the empty pot returning from camp was all the proof I needed that they had been a success.

Vigilius Mountain Resort

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

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 – 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 – I am an EGID Mum

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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“Barry Broken Bones”*

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-barnWe’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…