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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!

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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.

#NEAW2018: This is where it begins!

Over the last few years since we received M’s diagnosis of an Eosinophilic Gastro-Intestinal Disorder (EGID), I’ve approached National Eosinophil Awareness Week (NEAW) in a myriad of different ways. As NEAW 2018 has been approaching, I’ve been racking my brain trying to decide on the best way to talk about EGID for another year. I started posting my daily insights via my social media channels at the beginning of May, trying to highlight each day a different aspect of life with EGID along with a photo or image that captures the sentiment as best I can; we will almost inevitably spend the week “eating like M” again, though Mike might find that more of a challenge than me as he will be away on business for at least a small part of this week; and I will be attempting to post daily blogs during the week itself, sharing just a little of what our journey with EGID is really like.

In the past I’ve tried to come up with different ways to present my week’s worth of daily blogs, but with having just changed jobs and a busy few months at home, this year I decided to fall back on the format I chose 3 years ago and follow the NEAW theme itself, using the word E-D-U-C-A-T-E as illustrated above to inspire my posts each day.

And, as always, all that I ask is that you bear with me for the week ahead and read as many of the posts as you can. If you can also share them on to help spread the word about EGID, then you’ll be supporting families like ours and those of so many we know to raise awareness as much as we possibly can. The message is get out is that we’re working together, across the world, to make a difference and hopefully working towards finding a cure.

Third year a charm

When the email inviting me to once again participate as a judge of this year’s Free From Food Awards dropped into my inbox a couple of months ago, I started the necessary planning to ensure I could get to London and be away from home for a couple of days. Mike was booked to work from home for my 2 days of judging, I arranged for a bed at the FFFA headquarters and my annual leave was booked from work. It seemed as if everything had been meticulously planned and since the start of the year, I’ve been counting down excitedly to the days themselves. Needless to say, and just in case you hadn’t picked up from the tone of my above writing, things didn’t quite go as expected and life once again proved that even the best laid plans can go awry.

First of all, my arrangements to go the night before my first day of judging had to be tweaked when Mike was due to be working over 2 hours away and wouldn’t be home before 7pm that evening. The thought of the 2 hour train journey late at night and then travelling on to the FFFA house with the likelihood that I wouldn’t arrive much before 10.30pm that night meant that instead I had a quick rethink and booked myself on to the 6am train the following morning. With the tickets booked, it looked like everything was back on track and it was full steam ahead once again.

And then ‘flu struck; and with 50% of the household taking to their beds, I suddenly had to rethink it all. I was reluctant to give up my third year of judging completely and so reached an agreement with my husband in his sick-bed that I would head off on the 6am train as planned, but instead of having some time to myself and staying in London, I would instead return at the end of the day and pick up my nursing duties where they had been left off over 12 hours before. It would mean a long day for me with not much chance to rest and recover, but I knew that the day itself would rejuvenate me as I spent it with the fantastic bunch of fellow judges that have become friends over the last couple of years.

My choice of category this was “store cupboard”, something I hadn’t previously judged and one that I had found quite intriguing in previous years. This category encapsulates a vast selection of products that could be found in your kitchen cupboard (flours and packet mixes), fridges (mayonnaises and sauces) or freezers (cook from frozen goodies). With 49 items to taste, evaluate and score, this is a long day, which contained a lot of laughter thanks to the people I was with. I’ve made no secret that the last 12 months at work have been challenging ones and it proved to be a real reminder of exactly what is important in life and provided a focus on just how lucky I am to have such opportunities away from the 9-5 drudgery of the day-to-day.

There were a lot of products for us to try and some were definitely better than others. I think it fair to also state that some were better received than others, with the occasional one leaving us all scratching our heads as to why exactly they’d been entered into the awards. With a choice of 49 different items to taste during the day, I wanted to bring you the highlights as I saw them and although not all were safe for M, they would all be an ideal addition for G. In no particular order, I loved these:

Orman’s Vegan Easy Egg – a fantastic egg replacement product that produced an omelette that not only tasted just like the real thing, but had a similar texture as well. I hadn’t come across this before, but I absolutely loved it.

Probios Mayorice – a rice-based mayonnaise that was a good alternative for regular egg mayonnaise and, even better, was pretty much M-friendly (allowing for the fact that we have no idea whether he can tolerate mustard or not!).

Thai Green Curry sauce – I can’t remember who this was made by (Co-op maybe?), but it was a delicious and aromatic version of this popular Thai dish. Marketed as gluten-free, but sadly not also dairy-free as the manufacturers had decided to use double cream to thicken the sauce. Despite that fact, I enjoyed the mouthful I had.

Spice Sanctuary’s GF Asafoetida – This is one I’d never heard of, but is a fantastic gently aromatic spice blend that can be used to replace onion and garlic in your cooking. Not an inexpensive option, but you only need a little to flavour your dishes.

I once again had a fab day finding new products and taking some great options away with me to experiment with at home. Judging finishes this week and the results will be announced at the Awards ceremony in a couple of months’ time.

A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.

 

There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.

Unexpected Christmas treat

Whenever I write a review and share it on my blog, I do so because I’ve found a product or place that I’m impressed with and want to spread the word throughout the allergy community. Sometimes I’ve been fortunate enough to have received a freebie or two in advance for us to taste test and review – something you will always see declared on my posts – and I guarantee that we will always be honest with our opinions. It’s true that I rarely share things I don’t rate, although when I’m less than impressed with the service we’ve received, I will always make sure I shout that from the rooftops too. However, I never review with an expectation that we will receive something afterwards, though I’m honest enough to say that it’s always nice when we do!

That’s why, when I wrote about my discoveries at the FoodMatters Live conference a couple of weeks ago, I did so because I was just thrilled to have some new goodies for M to safely enjoy, which is always fantastic especially in the lead up to Christmas. What I didn’t expect was this marvellous parcel that was sent on to me just a few days after my post was published:

M spotted it propped up against the front door as we drove onto our driveway after school on Tuesday and was eager to be the first out of the car and to the door to pick it up and discover what had been delivered. His glee when he spotted the “Freedom Mallows” label on the front was unstoppable and he couldn’t wait to get it to the kitchen table and open it up. I had been in the know, as Elvin had contacted me asking for a postal address, but I’d only expected a small bag, or maybe 2, of mallows which I could sneak into their stockings on Christmas Eve. The treasures hidden within this box are immense and no stocking in our household is big enough to hold it all. Without a doubt, the excited squeals of both G and M which shook our house reverberated around our village and I just wish I could adequately capture that moment of absolute joy to share with you all.

A big thank you to Elvin at Freedom Mallows – you’ve made 2 not-so-small-anymore children very, very happy!