Tag Archives: friends

Small businesses too good to miss!

There really is something very rewarding about shopping local and supporting small businesses and that is even more true when those small business owners are also friends, or become friends as a result of their business. We have been extremely lucky over the last few years to develop friendships and therefore fantastic working relationships with food producers who have, as a result of those friendships, readily taken on the challenge of feeding M, even at his most restricted, and succeeded to the absolute delight of us all. I would really recommend getting to know your local farmers and food producers and don’t be afraid to strike up a conversation with them to see if they can help – you might just be surprised by their reply.

Borough 22 is one such success story and someone I love to shout out about on a fairly regular basis as you’ll quickly discover if you browse my blog. Created by the incredibly talented Ryan, who holds the as yet unchallenged place of ultimate superhero in M’s heart, this company bakes the most delicious allergy-friendly doughnuts, which have graced our table on many occasions. I discovered Ryan through the FreeFrom Food Awards a couple of years and he readily accepted my challenge to create an M-friendly doughnut using just the 5 safe foods M had at the time. Not happy with just creating a passable doughnut, Ryan continued to try to perfect the recipe each time we ordered until he produced a masterpiece that has kept us all delighted. With the countdown to Christmas now fast approaching, I will be placing our order for doughnuts soon and would highly recommend you beat the final order deadline of December 12 to add these unmissable treats to your seasonal table.

Another favourite was also a discovery thanks to the FreeFrom family of Awards, though this time the Eating Out Awards, rather than the Food Awards. Café Nouveau near Frome is a worthy three-time gold winner and owner Susan has become another family favourite since we first judged the venue 3 years ago. She has also embraced the challenge of feeding M safely and was delighted to hear this year that his list of safe foods had expanded enough for her to try a new dish when we visited as part of this year’s judging panel. This paragraph is something of a confession to Susan, who I know is a regular reader of my blog, as we had gone on the pretence of a late birthday lunch for Mike, carefully concealing the fact that it was a convenient cover story for our judges’ visit. This anonymity is critical when acting as a judge and it was fantastic to see first-hand that Susan’s care for her customers extended to all who were visiting the café that afternoon and not just those she might have suspected! G loves eating out here as she can happily choose anything from the menu and was delighted by the prospect of safe waffles the weekend we visited, though she was disappointed to learn they had run out of the dairy-free ice-cream she was hoping to sample.

My final shout-out is for a new business to my blog, but one that we are delighted to have found. Ben is an ex-work colleague of mine and he and his wife Mandy have become firm friends over the last few months. They own a small-holding just outside of Bristol and Ben has ventured into the world of producing home-made meat products, including some great gluten-free options, through his business, Ben’s Farm Kitchen. G has been delighted with their delicious GF honey roast sausages and sausage rolls, whilst Mike and I have become big fans of the “normal” and GF scotch eggs, especially the pickled beetroot ones. However, the real success story has been their willingness to try and prepare M-friendly sausages and burgers, which has possibly been one of the highlights of 2018 for M. I worked with Mandy to make sure the ingredients used were as safe for M as possible and the meat mix she created has been a huge hit in our household. M has already asked me to make sure we have a supply of “his” sausages and burgers in for Christmas and that’s a request I’m delighted to fulfil. Not only do we know the provenance of the food we’re eating, but I’m reassured that they want to get it right for the family as much as we do.

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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.

Downtown Toronto

We really were trying to squeeze as much as we possibly could into our 2 weeks in Canada this time round and so decided to end our visit with just 3 days in downtown Toronto to do a little sightseeing that we hadn’t done before. When we thought we were going to be visiting at Christmas, M had been really keen to have a repeat trip to Niagara Falls, somewhere we’ve visited with the children on 2 previous holidays, as he was desperate to see the Falls frozen, though we had warned that it might not happen even during December. However, visiting in the summer changed our plans a lot and Mike was really keen to fit in a day trip to Toronto Island if we could, something that we managed to do without any problem whilst we were staying downtown.

Our home for these 3 days was an apartment within walking distance of almost everywhere we wanted to go and, ironically, just across the road from that of another friend of ours, who we didn’t realise was living nearby. Our plans, as always, were fairly loose, though we had booked tickets for sports games and theatre trips to provide some structure for each day. We decided to visit the CNE – Canadian National Exhibition – with the same cousins we’d headed to Canada’s Wonderland with and had lots of fun wandering between the various exhibits. The day we went happened to be Veterans day and all 4 children enjoyed looking around the Canadian military section and exploring the tanks and aircraft on display. We even managed to find a stall selling Beavertails – a deep-fried dough sweet treat, shaped like a beaver’s tail – and bought a couple of us all to share. This treat was obviously not gluten-free as well as being covered in sugar, so G, M and I only took a small mouthful each, whilst Mike, his brother and the rest of the family enjoyed the rest.

Our day on Toronto Island was beautiful and started with a boat trip across Lake Ontario in glorious sunshine. The children were keen to explore what was there and we could easily have spent another day or two on the island itself. However, our time was limited and so we enjoyed more rides in the small island theme park, though nothing quite as adventurous as those at Canada’s Wonderland, before heading off for a short walk, a trolley tour of the island and the opportunity to dip our toes into another of the Great Lakes to finish off our day. We had to cut short our stay on the island as we were heading to a baseball game in the evening, but we managed to find time to walk some of the streets of Toronto to the Eaton Shopping Centre, before exploring the underground shopping concourses back to the stadium. G found the underground “streets” particularly confusing to walk and couldn’t quite believe that it was possible to walk the approximately 15 blocks from the Eaton Centre to the Skydome completely underground. All in all, it was a busy few days, but the perfect ending to our 2018 Canadian Adventures.

Her Inner Thrill-seeker

The next stage of our Canadian road trip found us driving over 5 hours east from Lake Huron to the peaceful resort of Beachwood, Lakefield to join a number of our friends and their families for a short summer break. We had been lucky enough to book a room in the main lodge for a couple of nights, which gave us the chance to catch up with these friends who we might otherwise have missed. It was also a fantastic chance for both G and M to catch up with some of their godparents, as 2 of G’s godfathers and one of M’s numbered amongst our friends staying at the resort that week.

G and M were both excited at the prospect of spending a few days lakeside and were delighted to find that they could swim in both the small pool and the lake itself. The resort was amazing and we were easily able to walk between our room and the various cottages our friends were staying in whenever we wanted. Our children were the oldest there and soon became popular, G in particular, with the younger crowd. It came as no surprise that they also befriended some of the other children on site and spent a lot of time moving between pool and lake to play games with whoever was around. As well as the swimming, the children also loved the opportunity to go out in a canoe (or should that be kayak?!) with Mike, hitch a lift on the speedboat when it took guests out water-skiing and spent a huge amount of time climbing and playing on the giant inflatable obstacle course in the middle of the lake. It was here that G started to find her inner thrill-seeker, something that came as a complete surprise to us all and was to develop even more as our holiday continued.

With our couple of days with friends behind us, we travelled south to the town where Mike grew up and our home for the rest of that week. Our primary aim whilst we were there was to visit Canada’s Wonderland, an awesome theme park and one that I had never before been to, despite my numerous visits over the last 20 years! Not only did we have 2 days of incredible fun, but we spent it with the rest of the family we hadn’t yet had a chance to see and both G and M loved every moment of racing around the park and trying out the rides with their cousins. It was here that G’s newly discovered thrill-seeking personality really came into its own as she and her cousin, H, challenged themselves to ride pretty much every roller-coaster or ride they could find. The boys were slightly less keen to ride the bigger rides, which suited my sister-in-law and me just fine, and quickly found themselves enjoying similar experiences, which were very different to those their sisters were undertaking.

G’s confidence in trying out so many different roller-coasters and rides – there’s only 1 I can remember her refusing to go on which the rest of us did – came as a complete surprise to us all. Our trip to Florida 4 years ago found M being slightly more adventurous than his big sister and I really hadn’t expected things to change as much as they did. It was fantastic to see G and H really enjoy the time they spent together, usually with Uncle Dave, though Mike found himself on some rides that he perhaps wouldn’t have otherwise chosen! It really was an amazing time with both family and friends and we could barely believe that we were heading into the final few days of our holiday as we packed up and moved on to our final destination in downtown Toronto.

Exploration through Enrichment

One of the things I love about G and M’s secondary school is the Enrichment week they run in June. Every year the young people are encouraged to explore new activities and opportunities during the week and try their hands at things they perhaps haven’t had the chance to experience before. When G was in Year 7, she opted for Bush Camp – an African-style adventure that involved 4 nights away from home sleeping out under canvas with campfire dinners, quirky showers and earth toilets for her home comforts. If there’s one thing that proves my daughter doesn’t always follow in my footsteps, this choice was it as I am a reluctant camper at best and it would take an awful lot to convince me that this could be considered as a fun week away from home. However, G loved every moment and couldn’t wait to choose her options for both Years 8 and 9.

Whilst G had determined that this year was going to be the year for a week away at pony camp in the Brecon Beacons, M’s choices were limited by the reality that he wouldn’t be able to spend a week away from home. We made the decision right at the start of his Year 7 year, not wanting to put him through once again the trauma of last-minute decisions and the inevitable disappointment that he experienced when we had to conclude that he couldn’t go away to the end of term Year 6 camp last year. We opted that M would be based at home for the week and instead he had to  the activities that he would participate in during the school day.

M decided on Action Adventure, where he got to try his hands at high and low rope courses, archery, building a trebuchet and bush-craft skills over the first 3 days of the week. Day 4 was designated as a community day, which was designed to give the children an opportunity to understand their role in our local community and to give a little something back. Some children did bag-packing at a local supermarket, others chose sponsored activities to raise money for local charities and M’s group of year 7s built wooden bird-boxes to be put up in the grounds of their school.

On his final day, M was keen to join the trip to the Tamworth snowdome, although he was disappointed that he had to ski, rather than being able to show off his rapidly improving snowboarding skills. He has been learning to snowboard since Christmas and has been coming on in leaps and bounds on the artificial slopes. He didn’t find it as easy to ski as he had hoped and the combination of time spent focused on skiing and ice-skating meant that he and his friend slept on their way back home. Both children had a great enrichment week and I’m grateful that this fantastic opportunity has been available for them both to fully experience, explore and enjoy. Not only am I impressed by the variety of opportunities they have to choose from, but the school did a great job of keeping the parents of around 900 students updated about their return home on the final day, which is no easy feat!

Quiet week…?

I wish!

I thought this week would be quiet as G is away at pony camp for her school’s enrichment week and M is busy doing “activity adventures” for his. I thought that would give me a week to catch up on writing some blog posts, finish the tales of our trip to Scotland over Easter and sort and store the photos from that said-same trip.

And then work just exploded and deadlines needed to be met – and still do to be fair – and life carried on with little consideration for my plans for the week.

Ah well, maybe that quiet week is just around the next corner?

#NEAW2018: E is for Engage

May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: U is for Unite

May 22: U is for Unite

Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.

Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.

This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK.  Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.

Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.

The question is, are you?

#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.