Tag Archives: Over the Wall

Summer Photo Round-up 2018 (more than just Canada!)

This time more than 10 days and more than 1 destination – but without a doubt, the best bits of a summer spent celebrating family and making memories.

 

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Finishing the summer in style

With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.

Quick summer catch-up

So the last 6 weeks or so have been filled with these moments and memories. Lots of posts to follow to catch up on all that we’ve been up to.

#NEAW2018: D is for Donate

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

Easter holidays

There’s only one thing that beats going on holiday for me and that’s planning for the next one…or two…or several. After our hugely successful Greek jaunt last summer, our attentions had naturally turned to our travels for 2018 and beyond: or perhaps, more honest, my attention was drawn to the “beyond”, whilst Mike and the kids were happy to just think about the next 12 months! With G heading into the start of 2 years studying for her GCSEs, which will kick off our family’s long haul navigation through the wonderful world of exams for both children, our holiday choices will need to accommodate school deadlines and revision demands as well as giving them, and us, the chance to kick back and relax away from it all.

We have long been considering a much overdue trip back to Canada to visit our family and friends, and have decided that 2018 is the year to do it. We are still ironing out the finer details for the trip – including which time of year is going to work best for us to go allowing for term dates, weather and flight availability – but with that big holiday tentatively pencilled into our calendars, our attention turned to fitting on some other smaller adventures throughout the rest of the year. Our starting point was a holiday in Scotland, somewhere neither child had been to before as well as a place we knew we’d be able to cater for M with relative ease and minimum stress. Having heard that G didn’t have a place on this year’s South Siblings OTW camp, we decided on 10 days during the Easter holiday and set to planning with relish once Christmas was out of the way.

Unfortunately, the bout of Aussie ‘flu that hit Mike and M in January combined with the tough couple of months that followed, meant that March rolled around with, much to my discomfort, nothing booked and only a very basic sketch of our proposed route through the North of England and Scotland. We decided to involve G and M in as much as the planning as they wanted and had been informed that the key places to visit on our approximately 1,800 miles car trip included Liverpool, Glasgow, Inverness, Edinburgh and Scarborough (don’t ask!). Armed with our calendar, a list of activities in each location, a reliable internet connection to facilitate mileage, travel time and hotel bookings in each of our destinations and a glass or two of wine, Mike and I sat down one night and booked what rapidly became known as our “Premier Inn” tour of Scotland.

As ever with our family, our plans to set off early to our first stop of Liverpool didn’t quite go according to plan, when Mike managed to enthusiastically floss a filling out of one of M’s baby teeth the weekend before our start date. It was only once the emergency appointment at our dentist was complete that we finally found ourselves on our way. Despite the late start, the Wednesday afternoon traffic wasn’t too bad, albeit the week before the Easter weekend, and we arrived in Liverpool by dinner time, ready to immerse ourselves in all things Beatles before carrying on in a more Northerly direction.

#FFFA18: The Shortlist

It’s really only been a couple of weeks since I was a third-time judge at this year’s FFFA and the exciting news is that the shortlist for the Awards has already been published. I absolutely love scanning through the shortlist, even for those categories where I’ve been involved in the judging, because I find it so encouraging to discover a plethora of products, many of which I’ve never heard of before, which will make such a difference to those living with a variety of food allergies. As well as those I’ve already identified as particular highlights for me on the day, I was excited to see La Crèmerie’s rice yoghurt detailed on the Milk Product Alternatives list. I actually discovered this rice yoghurt during my visit to the Foodmatters Live conference back in November and whilst I have yet to try this with M, I know it’s something that could be a real game-changer for him and I’d love to see this do well in the overall Awards.

What has been even better for me this year than list after list of amazing foods, is the final named category: the FreeFrom Hero Award. Back in December I was asked if there was anyone I would like to nominate for this special category and it’s been really encouraging to us as a family to see our 2 nominees appear on the final shortlist. You can only imagine my delight this week as I received copies of the emails that have been sent to tell our very own heroes of their success. When you look at the list I’ve no doubt that you’ll immediately be able to identify one of the nominations I made, that of Steve Whitaker and Jason Conners, the cooks at Over The Wall. Ultimately I don’t know whether either of our suggestions will be the winners of the category, but I wanted to share my reasons for nominating this fantastic pair for special recognition at FFFA18:

Your reason for nominating them: M’s rare gastro condition, complex food allergies, restricted diet and associated problems has meant that he has never been able to stay away from home except with his Grandma. At nearly 12, he has never stayed away on a school camp or even had a sleepover with friends. In 2016, he was offered a place on the South Health Challenges Camp run by charity, Over The Wall, which meant he would be able to stay away from home for a week, fully looked after by an amazing group of volunteers who cheerfully give their time to support these children, who suffer with life-changing illnesses.

In preparation for the week, I spoke to OTW several times to discuss M’s dietary needs and at least 2 months before camp, I was sent a sample menu of the food that the chefs were planning to cook for him based on his extremely limited diet (just 5 foods plus 1 oil and sugar), which was truly amazing and that M loved the sound of. We touched base the week before camp to just check whether there were any changes and when we arrived at camp, the staff took time to meet with me to discuss all of his needs.

M ate like a king the entire week he was away and reluctantly told me that “Sorry Mummy, but their food was even better than yours!”. He was kept safe, had no allergic reactions because of their incredible awareness of the care that needed to be taken, was able to make friends with others facing similar health challenges, tried out so many experiences he’d never been able to have before and just felt like a child as his health problems firmly took a back seat to the more important job of him just having fun. As Mum, I felt confident that they knew what they needed to do to support him and have subsequently seen just how amazing their care can be when they called whilst G was away on sibling camp because they were concerned that she wasn’t eating the GF/DF food they were preparing for her.

We are hoping that he will be able to go to OTW camp again this year, but are just so grateful that he even had that opportunity to experience it once. These chefs (and all staff to be honest!) really deserve recognition for making M’s first experience of being away from home such a positive one.

The results will be announced on Twitter, on the evening of April 17th (@FFFoodAwards) and I’m hoping that we might once again be able to be there to recognise the hard work and incredible dedication of all those shortlisted finalists as well as celebrating the success stories of the worthy winners.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

NEAW 2017 – Wings to fly

As a parent, one of the biggest challenges you face is helping your child grow in self-confidence, develop independence and to ultimately give them the wings they need to fly away from the security of the family home. There are so many obstacles to overcome along the way and when a chronic illness is thrown into the mix, it can feel almost impossible to let your child take those first steps on their own. Our determination to not let EGID define either child means that every day is an opportunity to let go of our own anxieties and concerns, and encourage them to make their own decisions regardless of the limitations that health, medicine and diet place on them. Of course, much as we work to equip G and M with the skills they’ll need as they grow up, I know that they need to learn so much more than what Mike and I can teach them on our own and so we always look for any opportunity to develop their learning from experiences that are beyond our ability to give.

That’s why once again this year, I completed the application forms for both G and M to attend the fantastic camps offered by charity, Over The Wall, knowing that their respective weeks away from home will be all about friendship and understanding and being amongst equals and building self-esteem and so, so much more. When G came home from the South Siblings Camp last year, she was a different child to the one who had left us just 5 days before. The time spent with others who have a similar home life to her was invaluable as she realised that her life experiences didn’t isolate her in those circumstances; and the focus on her and making sure that she had the best time she could helped G to find a self-worth that she had been struggling to develop at home and at school. Likewise, M had what could only be described as the best week ever as he was able to spend a week away from home without family for the first time in his life. He tried his hand at activities that had terrified him before and he too found great comfort in the realisation that he is not on his own in his health challenges.

We were all delighted when G heard she had a place at this year’s Siblings Camp and we couldn’t wait to hear all about her adventures there as a Green Girl. From the moment I dropped her off with some familiar faces, including the unexpected, but much welcome presence of G’s buddy from the GOSH YPF who was volunteering for the very first time, I knew that she was destined for another great week. Their unfailing attention to detail and care for the young people they were responsible for during the camp was impressive. We received a phone-call on the second night to say that whilst G was having an amazing time, she was struggling with the “fancy” gluten- and dairy-free food that the chefs were lovingly preparing for her and wasn’t really eating as much as they would like.  A quick catch-up to understand G’s food preferences and the reassurance that they would continue to keep an eye on her was all I needed to be certain that their care was absolutely everything I could want it to be.

M, Mike and I were all able to make the journey to pick G up at the end of her week away and were all immersed in the joy that is the camp bubble of OTW for the short time that we were there. Our Green Girl had tried her hand at most things, exceeded her own limitations and came away with a much-deserved pride in her achievements. This photo of a beaming G at the top of the climbing wall reflects her determination to overcome her self-proclaimed fear of heights and the pride she felt when she surpassed what she managed last year to achieve: more than she had ever believed herself capable of doing. Unlike the previous year, when she had been reluctant to take part in the Talent show, this time round, she went prepared with a routine she’s been working on during her school dance club and performed with a confidence and grace that reaped an impressive number of compliments as well as moving her YPF buddy to tears with her passion for her dance. G became good friends with several in her team and has been keeping in contact with them in the weeks following camp. She has developed a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer.

It is thanks to Over The Wall that my children are becoming all that they can be and are learning that chronic illness doesn’t have to be a hurdle to anything they want to do. Over The Wall truly gives both our children wings to fly and our thanks just don’t seem to be enough.

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.

 

NEAW 2017 – His illness does not define him

Our life experiences influence our view of the world that surrounds us. Good or bad, everything we do or see or hear or learn will affect our outlook on life, on whether we become individuals who see that hypothetical glass as being half-full or half-empty and how we react to our interpretation of that reality. When you’re growing up with a chronic illness as your one constant companion, it can come as no surprise that that condition begins to shape the person you become and the relationships you have with the rest of the world.

Rightly or wrongly, I have encouraged M to embrace his EGID diagnosis and become an advocate for himself and others living with it. M is, without a doubt, so much more than this disease and yet it is an integral part of the young man he is growing up to be. Our local gastro team are keen that M doesn’t view himself as a “sick kid”, that he doesn’t let his diagnosis stop him doing whatever he wants to do or being what he wants to be and those aims sit well with our approach to helping him cope with it all. However, I can’t and won’t agree to ignoring the reality of his life – the numerous hospital appointments, admissions and procedures; the daily medicines; the restricted diet and 12 months with a NG-tube mean that he is not like his friends, like other kids his age. In the last year alone, M has been seen at our local hospital over a dozen times and that does not make him the same as the rest of his classmates. Despite everyone’s best efforts, 2 and a half years after that first feeding tube was placed, M still only eats 6 safe foods on a regular basis and that makes him stand out from the crowd, not just at school, but at every activity or event he attends. He is, in all truth, a “sick kid”, but that label does not sum up who he is as an individual.

No matter what the medics suggest, I can’t pretend that all those experiences didn’t happen to him, to us as a family, but I will endeavour to make sure that M’s illness is not all that defines him.

Yes, he’s a child who cannot eat the same as his friends; but he can eat out and enjoy food with them.

Yes, he’s a child who lives with constant pain; but he has learned to ignore it and overcome it and achieve despite it.

Yes, he’s a child who spends too much time in hospital at medical appointments; but he is developing a confidence to question and understand and advocate for himself.

Yes, he’s had experiences that most adults I know would struggle with; but he has developed tremendous courage and an increasing self-worth in who he is as an individual.

The truth is that, just as my 30+ years with T1D has shaped the woman I’ve grown up to be, M’s life has been, and will continue to be, affected by his EGID diagnosis. We cannot pretend that the difficult times haven’t happened, we can’t airbrush them out of our family history and it would be doing a disservice to the fortitude and bravery of both my children if we tried to do so. They are so much more than the sum of their parts and whilst EGID has an unquestionable influence on the individuals G and M are becoming, it absolutely does not define either of them in their entirety, and nor will we ever let it.

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.

NEAW 2017 – Shared Experience

If there’s one thing the last few years have taught me, it’s that it is truly worth reaching out and sharing the story of our experiences, as it is thanks to those who have had the courage to share their stories with us that we have found the strength and courage to persevere and carry on, even when the hardest of decisions have had to be made. Talking about the challenges that have faced us, sometimes on a daily basis, is unquestionably therapeutic and can often be a self-centred process, but I’ve learned that sometimes, when I’m speaking about a moment that represents only a small part of a much larger picture for us, that is the thing that speaks most into the heart of a matter that is a seemingly insurmountable one for another family. I’m grateful for those who have taken the time over the life of my blog to get in touch and let me know that a post I’ve written has sometimes made what is, for them, a big difference at that time in their life.

Today is the start of National Eosinophil Awareness Week 2017 (#NEAW2017), our fifth year of finding new ways to talk about EGID and telling those in our community, and beyond, about this disease. Last year, we went all out with our approach to raising awareness and raising funds for the charity, Over The Wall: I appeared for the third year in a row on our local BBC radio station, talking about life with M and with EGID, and our local paper also ran another story highlighting what we were trying to do. We attended some community summer fairs to hand out leaflets about EGID as well as running some mini carnival games to boost our fundraising total. M took some of those games into his school and shared in assembly the short film that he and G had created to explore the impact of EGID from his point of view. Likewise, G’s secondary school offered their support and ran a Year 7 non-uniform day and asked every tutor group to show their film. We extended our fundraising efforts past the third week of May and, with the help of our regional theatre who kindly agreed to have collection buckets available for 2 weeks at the end of each performance, we managed with the help of the wider community to collect more than a staggering £1,000, which I not only know will have been put to good use, but have seen in the fantastic OTW South Siblings Camp that G attended for the second time just a few weeks ago.

This year we’re taking things a little easier, though I’m still planning to write a blog post a day for the week and as a family we’re once again taking on the challenge to “Eat like M” for the duration. Our week starts with another radio appearance, with this year marking the debut appearance of M, and G if she deigns to give more than her usual, teenage monosyllabic answers on air. I am filled with some slight trepidation as to what might come out of their mouths as they speak live during the programme, but I’m looking forward to hearing what they both choose to share about life with EGID. As M’s career at his incredible Junior school draws to an end, the Headteacher has agreed to support our awareness-raising campaign for the final time and is helping M to host “Dress as your Hero/SuperHero” for the day on Friday May 19th.

We have also asked for donations of any unwanted fancy dress costumes to send to Over The Wall as part of their appeal this year. They are looking to replace as much of their existing stock as possible for camp and whilst they are grateful for any and all that they receive, they are particularly looking for costumes to fit teenagers and adults. If you have some lying around your house and want to help support this amazing charity, you can find the Head Office address to send those costumes to here. All in all, I have no doubt it will be another busy week, but hopefully a good one too and of course, you can all do your part to help us by sharing my blog posts wherever you can to reach out to your community and share our EGID experiences.

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.