Tag Archives: Education

An Enriching Experience

June always seems to be a busy month for G and M and this year has been no exception to that unwritten rule. As well as the hell that was the lead up to G’s Year 10 mock exams – the exams themselves have proved to be not quite as stressful as we all feared they might be – there’s also been the much more enjoyable enrichment week for M and G’s work experience week too. Add in Live Lounge performances at school, end of year performances with their performing arts schools, we’ve finally found ourselves at the end of June and it’s time to take a deep breath, enjoy the last few weeks of school (if that’s even possible) and look forward to the summer holidays.

Last year, M was part of the school-based activities week as he wasn’t in a position to be able to consider being away from home from a health perspective and this year was no different, although the school makes the decision that all Year 8 students remain on-site, rather than being offered residential trips. After much deliberation, he was fortunate enough to be awarded a place on his first choice activity: the photography course. M really enjoys taking photos and has captured some really stunning snaps using just his phone’s camera at home. This was an opportunity to learn much more about the craft of photography itself and he spent 4 days learning about shutter speeds, taking action shots, images through water – lots and lots and lots of water! – and using light to write and capture words. He loved every moment of the course and has already decided to start saving up his pocket money so that he can buy his own camera as soon as he practically can.

The Friday was spent on a different activity and much to our surprise, he opted for paint-balling, something that has left him battered and bruised in the past. In fact, M hasn’t been paint-balling since he was hit accidentally by an adult using a high-powered weapon in the wrong part of the course at a friend’s birthday party. Whilst he wasn’t injured particularly and bounced back very quickly, the experience rattled most of the people there as M had his feeding-tube at the time and he was sore for a few days afterwards. However, the prospect of running around with a group of his friends and their plan to gang up on some of the teachers seemed to excite him and he couldn’t wait to go on the Friday even despite the rain. It was another fun-filled day and he enjoyed it all, even if he did come home sporting a rather impressive bruise to his right thigh by the end of it.

Whilst M had a week of enriching and engaging activities, G meanwhile found herself completing her work experience week. Back at the start of the school year, we had gone through a number of possible posts for her to consider and apply to for the week, but in the end she decided to spend the time working at the surveying firm as Mike. She spent her week learning how to carry out and complete property valuations, building surveys and home-buyers reports as well as the more mundane office and administration tasks that all good work placement employers expect: photocopying and shredding! Her Friday saw her spending the day at a building site and finding out about project management and property insurance claims. G very much enjoyed her week, though her diary entry for the Wednesday perhaps sums it up best – when asked “What have you learned about work this week?“, her honest response was “That it’s exhausting!

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City Adventures in Berlin

Given the huge amount of history contained within this European city, it’s really no surprise that there is an incredible number of museums to visit in Berlin and somewhat understandably, by the end of our penultimate day, both children were beginning to grumble about feeling a little “museum-ed” out. We were lucky to enjoy some glorious sunshine whilst we were there, so we took every opportunity available to venture out on foot as well as making using of the “hop-on, hop-off” bus and highly efficient public transit system. I think (hope) we managed a good balance between those museums with exhibits about Nazi Germany and those about the Cold War era and it was great to hear G being able to explain in more detail some of the topics she has learned about at school. Here’s a list of some of our city adventures in Berlin this May:

Memorial to the Murdered Jews of Europe: A strangely effective and emotive memorial built within 5 minutes walk of the Brandenburg Gate. These 2,711 concrete slabs vary in size and shape and are constructed on undulating ground, which once formed part of the “death strip” that split the city into East and West by the Berlin Wall. There is no attributed significance to the number or design of this memorial, but instead it intends to invoke a sense of unease as you wander through the rows. Beneath the memorial, there is an information centre, which contains details and memories of some of the Jewish families affected by the horrors of the Holocaust from 1933 on. Unfortunately, the centre was closed on the day we visited and we didn’t have time to go back, but it is somewhere I’d be keen to revisit if we had the chance.

DDR Museum: Located on the banks of the River Spree, the DDR museum details life in East Germany under Socialist rule and is a fantastic interactive experience, which M really enjoyed. It looks at all aspects of everyday life from school and work to holidays, transport, national service and beyond. M was particularly taken by the opportunity to try his hand at driving the Trabant P601 simulation, whilst G spent a long time at the interactive desk which gave in-depth information about different parts of the political history of Berlin. My Grandad came from Czechoslovakia to the UK as part of the Allied forces during the war years and I found that the exhibits invoked many memories of how my grandparents lived, albeit in Northamptonshire, as well as of my first trip to Czechoslovakia in 1988 to visit our family who still live there. A great museum which kept us busy for between 2 and 3 hours.

Palace of Tears: This tiny museum is one we almost missed, but is definitely worth dedicating at least an hour to wander through it. It is based in the former border crossing point at the Berlin Friedrichstraße station, which was only used for those leaving East Berlin for West Berlin. It covers the timeline from the building of the Berlin Wall to its collapse, looking at the stories relating to the checkpoint as well as the process to achieve the reunification of the country. M and I spent some time watching the video of the fall of the Berlin Wall and talking about the fact that this event was living history for me – something that I remember happening during my childhood when I was about his age.

Jewish Museum: This was one of the museums recommended to us by G’s history teacher, but unfortunately the permanent exhibition is currently closed as it is being redeveloped. However, we spent the morning seeing what was open to the public and it was definitely time well-spent. Split over a couple of floors, we first visited the Holocaust exhibit, which displayed mementos, letters and photos from many Jewish families and relayed some of their history as well as detailing whether they died in a concentration camp or were fortunate enough to survive that terror. From there, we ventured outside through a memorial garden, before heading back in to the “A is for Jewish” interactive exhibit, which talks about the many varying aspects of contemporary Jewish life in Germany. Finally, we walked through the “Shalekhet (Fallen Leaves)” art installation, where you quite literally walk on 10,000 sheet steel faces of varying sizes symbolising all innocent victims of war and violence.

Mauer Museum at Checkpoint Charlie: This was one of the surprise hits of our holiday and one that we wouldn’t have visited if it hadn’t been for my insistence that I wanted to go to see Checkpoint Charlie on foot and our need for something to occupy our unplanned afternoon. Filled with an absolutely incredible amount of exhibits, it started with a look at the story of Raoul Wallenberg, a Swedish businessman who is thought to have saved thousands of Jews from Nazi-occupied Hungary during the Holocaust before he disappeared in 1945 and was presumed to have died whilst imprisoned by the KGB, although there have been very many question marks surrounding the circumstances, and timing, of his death. Upstairs the exhibit moved through very many escape stories from East Germany, which absolutely fascinated M, not least of which was the armoured escape vehicle on display. There is also a huge area dedicated to human rights and worldwide civil unrest, including Ukraine and North Korea. An absolutely fascinating museum and one that you could easily spend a day, or more, exploring.

German Spy Museum: The unquestionable highlight of all the museums we visited in Berlin and it got a definite thumbs up from both children. Starting with a timeline of the development of espionage worldwide through the ages, this museum blends its interactive experience with a particular focus of espionage during the Cold War era. The main exhibit was divided between East and West Berlin and how spies played a part on both sides for many years. The laser maze gives visitors the opportunity to see if they can successfully work their way through the lasers to reach the abort button before enemy missiles are launched. Sad to say, neither G or M managed it, triggering the alarms as they made their way through it, although they both had great fun trying. There was also a section about fictional spies, most notably 007 himself, James Bond with some memorabilia and clips from several of the films. We hadn’t left ourselves enough time to see everything this museum had to offer as we had to head back to the airport for our flight home, so it’s definitely one to revisit in the future.

Bringing History Lessons to Life in Berlin

I’m not sure if I’ve mentioned it before, but I’m a big fan of holidays. Not just the trips themselves, but I absolutely love the process from the moment we start thinking about the perfect destination to pick and, much to Mike’s frustration, can frequently be found thinking about where we should travel next, even before we’ve left home on the next one booked. We haven’t done too much travelling since our trip back to Canada last summer, but no sooner had G and I got home from our fantastic day out at the Strictly tour, than it was time to finish the packing and zip up the suitcase for our 5 day half-term break.

Our holiday was perhaps not what people expected, in that we weren’t chasing the sun with a few days at the beach, even though both G and M are desperate to go back to Greece and mention it every time they can possibly shoehorn it into any conversation. Instead, we had taken inspiration from G’s GCSE history syllabus and her learning about Superpower relations, the Cold War and Nazi Germany during the inter-War years, subjects which also happen to tie in quite nicely with M’s focus on World War 1 in his history lessons this year; and so headed to Berlin. As the children have got older, we try to involve them more and more with planning our activities whilst we’re aware from home and this trip was no different. G spoke to her history teacher just after Christmas as the school had taken a group of their A-level students to Berlin a few weeks earlier and came home with some recommendations of the best places to visit to help solidify her learning and understanding of these eras.

Armed with that information as well as the additional research Mike had carried out in the preceding weeks, we had plenty to do to fill our time and couldn’t wait to get started. I had found what looked like a great place to stay: the Citadines Kurfürstendamm Berlin apart-hotel, meaning that we had access to a full kitchen which always makes life a little easier when travelling with food allergies. We were ideally located not too far from the main retail street and within easy walking distance to not only shops and restaurants, but also the Berlin U-Bahn, or Underground rapid transit system.

Our first day started, as it so often does when we travel to a new city, with a “Hop-on, hop-off” bus tour, although we weren’t as impressed with the City Circle Tour offering as we have been with other tour companies we’ve chosen in the past. However, it gave us a great introduction to the city of Berlin itself and helped us work out how to get to the various sights on our list as well as ticking a few of them off without too much hassle. Both G and M were fascinated by their first view of the few remaining remnants of the Berlin Wall, the Brandenburg Gate and the bombed remains of the Kaiser Wilhelm Memorial Church, all of which really brought their history lessons to life.

Welcome to 2019

It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.

To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.

However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.

Here’s to a year of discovery and wonder for us all.

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.

Scottish Engineering

Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.

#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: A is for Awareness

May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.