Category Archives: Parenting

NEAW 2017 – Living with the unknown

2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.

This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.

Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.

Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.

This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

#NEAW2017

May 8th: No matter what’s going on, there’s no escaping #EGID or leaving it at home, even for one day. For all those facing exams over the coming weeks, their EGID will be just one more challenge that they have to survive.

Today, this is for M – and his schoolmates and the other Year 6s across the country who are taking their SATs this week. We’re so proud of you: of the obstacles you’ve already overcome and your determination to succeed. Just remember, the results really don’t matter.

Mini Cycling Adventures

A month ago we spent our Saturday afternoon in what can only be described as a most unusual way for our particular family. It had all actually started a few days before, when Mike’s bike had developed a persistent flat tire that no amount of minor repair work was going to fix and he finally decided to take it to our local Halfords store for a complete overhaul. Unfortunately, the prognosis wasn’t good and sadly Mike had to come to terms with the terminal diagnosis that his bike just wasn’t going to make it and it was time to think of finding a suitable replacement. Not only did Mike need to urgently replace a crucial part of his daily commute, but my Mum had also been reminding me that I needed to actively do something to buy myself the bike that she has bought me as a birthday present for 2 years in a row, and so we headed back to Halfords to see what we could find.

If I was to say that G and M were not too enthused by the prospect of an afternoon investigating potential bike purchases for Mum and Dad, it would absolutely not be an exaggeration, but they really didn’t have much of a choice and so they begrudgingly came along, grumbling all the way. When we first arrived at the shop, it seemed fortuitous that they were having a end-of-season sale, but I really should have realised that being April Fool’s Day, the joke would ultimately be on us. Mike had already done some investigating into some options for me and I swiftly settled on a purple Apollo Elyse that would be everything I needed for future family cycling adventures.

And then the fun started. Whilst Mike explored the 2 floors to see what choices he had, both children took matters into their own hands and found bikes that would suit them too. We had been briefly discussing the fact that both G and M were starting to outgrow the bikes they had at home and the unquestionable allure of some great deals in their end-of-season sales plus a further negotiated discount because we were buying 4 bikes, instead of the anticipated 2, meant an attractive offer that we just couldn’t turn down.

It took a couple of weeks to pick up the bikes as they had to be ordered, delivered and serviced before we could finally take them home. Mike’s bike was pressed into instant service and the children were keen to get theirs out for a test run as soon as was humanly possible, so the Easter holidays came at the perfect time to allow them out on some mini adventures with Mike. However, I hadn’t had the same opportunity until last weekend dawned with the most glorious weather and with no homework left to do for either child. We decided to head out in a different direction than the ones they had been in before and cycled along the country lanes winding through the farm land and fields that surround our house. We cycled to the next village and back, not a huge distance by any stretch of the imagination, but a 5 mile introduction to what promises to be some great family adventures for 2017.

Giving fair warning

It might be late on a Sunday evening, but tomorrow sees the start of May and just as in previous years, I’m giving what I consider to be fair warning!

The 3rd week of May is National Eosinophil Awareness Week 2017. For the second year in a row, I will be trying to post a new photo, fact or update on my Facebook page every day for the whole of May, which of course will include my regular daily blogs during the week itself. With M’s SATs and some tight deadlines at work, this will be no mean feat, but one that I will be determined to achieve if at all possible. Some might happen earlier than others, some might simply be repeated from last year, but the important thing is that we’re raising awareness of #EGID.

Please feel free to share and help us reach as many people as possible.

Birthdays, exams and an awards ceremony too

The last 10 days have been busy ones and I for one am glad to be heading into the last week of term, though the dawning of the school holidays definitely does not equate to any time off work for me this year. Looking back at my blog posts from previous years, it does appear that March and April are consistently a hectic time for us and this year was no different. World Book Day passed surprisingly easy, with M heading to school in his own clothes for his school’s Roald Dahl-themed day as he chose to represent “…a material witness at the trial of Goldilocks, Mummy…” in Dahl’s version of that well-loved Fairy tale.

We seamlessly segued from my 40th celebrations to M’s 11th birthday and onto my 4th blogaversary before celebrating Mother’s Day in fine style too. School presented its own challenges to both G and M, with homework tasks, concert rehearsals and posters revising the finer details of grammar and punctuation – fronted adverbials anyone? – filling our evenings and weekends. Next came 2 sets of exams: Performing Arts exams for both children with their Stagecoach school, followed just a few days later by M’s Grade 1 Cello exam, which I’m delighted to say he passed despite a persistent reluctance to give much more than a cursory nod to his daily practice. Continuing with the music theme, G performed with the school clarinet group at her school’s Spring music concert last week, whilst M is singing with his school choir at a regional music concert involving children from Junior schools across our county this week.

On top of all of that, we also managed to squeeze in a trip to London for 4 and an evening spent celebrating the success stories from this year’s FreeFrom Food Awards. Once again held at the Royal College of Physicians near Regent’s Park, the evening was a glittering event designed to recognise some of the fantastic freefrom products nominated this year and was a great opportunity to not only catch-up with friends from the allergy blogging world, but also try those tasty treats that had pipped their competitors to the winning post. Hosted by the fabulous Michelle Berriedale-Johnson, director of the FreeFrom Food Awards, with a helping hand from restaurateur, celebrity chef and awards patron, Antony Worrall-Thompson, the Awards were a real testament to the changes brought about in the Freefrom world over the last few years.

The complete list of winners from #FFFA17 can be found here, but the big winners of the night were Irish bakers, Bfree, whose Sweet Potato Wraps are impressively top 14 allergen free and won high praise from many of the judges for being “…enormously versatile, beautifully soft and pliable, a lovely warm colour and tasting delicious…” This year was the 10th anniversary of the FFFA and to acknowledge this remarkable achievement, nominations had been invited to recognise a Freefrom Super Hero from within the industry itself. There were 5 very worthy nominees, all of whom are, without a doubt, heroes within the Freefrom world, but there could only be one winner and the inspirational Clare Marriage of Doves Farm was chosen for her unquestionable dedication to the production of numerous flour blends that have transformed the lives of those having to bake freefrom.

It was a fantastic night and it was wonderful to be able to mingle with the crowds of fellow freefrom foodies, rather than negotiate them with a small child in a wheelchair as we did last year! G not only enjoyed helping herself to a number of the goodies on offer on the Winners’ Buffet, finding a new gluten-free favourite with Kelkin’s chocolate-flavoured teacakes, but also found the courage to strike up a brief conversation with her very own Super Hero, Lucinda Bruce-Gardyne, the creator of G’s gluten-free bread of choice, Genius. I can’t wait to see what the year ahead brings for the Freefrom industry and am definitely looking forward to #FFFA18!

A fine Fish supper

With an unbeatable combination of good health all round, a new approach to food challenges and an accommodating restaurant, this year we had one of the best Mother’s Day lunches that we’ve enjoyed in a long time. Last year’s celebration fell flat, when my Mum was relegated to her sick-bed and left Mike, the children and me to savour yet another fantastic family meal at what has become one of our all-time favourites for allergy-friendly meals, Wagamama. However, a recent visit to our local Wagamama for M’s birthday tea meant we didn’t fancy a return visit quite so soon, after all it is possible to have too much of a good thing and as much as I fancied treating Mum to a late lunch at the amazing Cafe Nouveau, it was just too far to trek this weekend. Fortunately, the opportune coincidence of trialling prawns and our Sunday lunch plans meant we could visit an old haunt that received recent recognition as a gold award-winning venue at the 2016 FreeFrom Eating Out Awards.

Of course, we couldn’t just turn up on the day assuming that we’d be able to safely feed both children, so a preliminary phone call to not only book a table, but also run through all of our allergy requirements for the meal was an absolute necessity. We have been incredibly lucky in the past as we don’t always call ahead and have still found ourselves able to eat out as a family, but a special meal such as this one required a little forward planning. Our restaurant of choice was the marvellous Fishers Restaurant in Bristol and we had our fingers crossed that the inclusion of prawns for the day would make it possible for us all to enjoy a lunch at this great seafood restaurant. The staff were fantastic when Mike called and reassured him that not only could a safe prawn starter be prepared for M, but, as they were including chicken as a main course for Mothering Sunday, prepping chicken, rice and cucumber would be an absolute breeze too.

We had high hopes for our first 3-course meal in a long time, but the generous portion sizes left us all feeling full and satisfied before the dessert menu could even be properly considered. Fishers were able to adapt most of their menu options to be both gluten- and dairy-free to suit G and she was thrilled to be able to order calamari with a sweet chilli sauce, something that is an unexpected favourite with my oft-time picky oldest. She was also delighted by the gluten-free bread basket that she was able to enjoy whilst waiting for her starter to arrive and there was barely a crumb left by the time the calamari appeared. Mum settled on mussels, Mike picked smoked salmon and M and I enjoyed a similar starter of tempura tiger prawns, though mine came with a soy dipping sauce. I would love to be able to share with you the plate of prawns that M was presented with, but my joy at being able to watch my foodie savour every single mouthful meant that I forgot to pull out my phone until that plate was cleared.

G and M’s choices for their main course were a little more mainstream, with M being greeted with a fantastic-looking plate of plain rice, grilled chicken and cucumber batons, whilst G’s huge plate of gluten-free haddock and chips was enough to feed a small army. I was pleased to learn that they have a dedicated fryer to cook all of their gluten-free offerings and seemed to be very much attuned to the risks of cross-contamination for their freefrom guests. We had already confirmed that M could eat the lemon sorbet for pudding and were keen to see what was on offer for G. Sadly, this is when disappointment really hit as despite their brilliance in providing lots of gluten- and dairy-free alternatives for the savoury courses, dessert was a real let-down. The only choice readily available for G was sorbet, which she absolutely hates and when pushed, all the kitchen could offer was the apple crumble – without the crumble. We had heard that in the past, they had been able to go off-menu and cook a gluten- and dairy-free banana fritter, but we were told that they were no longer able to prepare that as an alternative. It was perhaps lucky that G and M were both full to the brim from the rest of the meal and didn’t really want to stick around any longer for pudding and so the rest of us willingly abandoned the sweet finale to our meal and instead travelled back to my Mum’s for a refreshing cup of tea.

Fishers was a great choice for lunch and we were impressed at their willingness to accommodate some tricky dietary requirements. However, the lack of an imaginative dessert menu for those with allergies was extremely disappointing and an area that could definitely do with some improvement to make it a truly excellent Freefrom restaurant.

Happy 11th!

Somehow it doesn’t seem real that another year has passed and we’re marking a certain young gentleman’s 11th birthday. When my challenging pregnancy resulted in a premature birth, I had no idea that this Japanese proverb would become the very mantra of our lives as a family of 4. Today we’re celebrating 11 years filled with love, laughter and the continued determination by our youngest to get back up each and every time life knocks him down.

Happy 11th birthday M, may your day be filled with everything you want and so much more!

 

Impractical Jokers – Birmingham 2017

The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Young Carers Awareness Day 2017

Today is Young Carers Awareness Day, a national day for the recognition of the estimated 700,000 Young Carers in the UK. I’ve written before about Young Carers and how G was finally recognised as one last year. She now regularly attends our local carers support group and has developed friendships with a couple of other girls who are in her year at her secondary school. Young Carers can care in a number of ways, the most obvious being giving physical help to family members, but, as we discovered with G, the emotional and psychological support given is just as important to recognise and can take just as big a toll on the young person. Organisations such as the Carers Trust, Barnados and Over The Wall all work to ensure that these young people are given the same opportunities as their friends and have time to be a child. This support is vital to ensure that G, her friends and others like them have as happy, healthy and balanced a childhood as they can.

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