Return to an old haunt

At one time, London was very much our home from home as we visited several times a year to attend M’s hospital appointments at GOSH and whenever those appointments didn’t fall on a Wednesday afternoon in term-time, always tried to tie it into a few days away from home. Both G and M had the chance to stay in London as part of their school’s enrichment week residential trips, and both said no. After all, why would they go with school to a city they’ve spent more time in than sometimes they’d care to remember?

Bearing all that in mind, it could come as something of a surprise that we’ve spent the last couple of days back in this old haunt of ours – and by choice, not by necessity thanks to our success in getting theatre tickets through Kids Week London. We’ve been extremely fortunate to see a number of shows over the years and this time we decided to chat over the choices with G and M before I attempted to buy the tickets the moment the website opened. Much to our surprise, the children had very different ideas about the shows they wanted to see and so I was set the challenge of trying to get tickets for G and Mike to see “Phantom of the Opera” on the same night that M and I headed to “School of Rock”. Fortunately, I was successful and with our theatre trips confirmed for the Thursday evening, we decided to make a short break of it and visit a handful of sights we haven’t been to before.

Our day started with a 20 minute walk to our local station to catch the London-bound train. I had made it clear to both children that I didn’t want them plugged into their electronics for the duration of our journey, so M had selected a few card games to take with us and, much to my amazement, we spent the entire time playing an array of card games as well as a couple of rounds of Marvel Top Trumps.
In no time at all, we had reached London and then it was a case of trekking across the city until we reached our first destination of the day, Tower Bridge. Thanks to M’s hard work researching and planning our routes and timings before we arrived, we decided to get off the underground at Monument and then walk along the river path to the Tower of London, where we ate our picnic lunch before climbing the stairs to explore the history of Tower Bridge itself.

The climb to the top of one of the towers was interspersed with facts about the construction of the bridge itself 125 years ago and, having reached the top, were then able to walk across the walkways linking the 2 iconic towers at either side, including a stretch of glass walkway that looks down onto the road and river below. This is not our first glass walkway – we’ve ventured onto the one at the CN Tower in Toronto too – and M was quite happy to wander across, jump onto and sit down on it. G, however, was lot more reluctant, but with a little gentle persuasion and a lot of hand-holding from me, she tentatively stepped onto the odd corner here and there, though she pointblank refused to do much more than that. Walkways conquered, we then headed on to the pump house to understand how the original mechanisms to raise the drawbridge worked before stopping for a vegan ice-cream treat from the ice-cream van cannily parked in the square beneath the bridge.

By the time our ice-creams were devoured, we were all ready to head to our hotel, fortunately just a short walk away along the South Bank. We have stayed at this Premier Inn near Borough Market several times before and find it wonderfully centrally located and easy to reach as well as surrounded by a number of chain restaurants that make it easy to feed both G and M. We had just enough time to unpack bags, dig out the theatre tickets and freshen up before we headed back out the door in search of dinner and our shows. Once we had finished our meal at the nearby Pizza Express, Mike and G disappeared in one direction, whilst M and I went off in another in search of our respective theatres. It was a wonderful evening and both children absolutely loved their musicals of choice. I would highly recommend a trip to see “School of Rock” as would M, whilst Mike and G raved about “Phantom of the Opera”.

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Time to stop and smell the roses

New job, end of term, fundraising plans, health challenges, summer holidays… sometimes it really is nice to be able to stop and smell the roses, especially when they’re as beautiful as this bunch of flowers currently gracing G’s windowsill. A thank you from her Stagecoach school for all her help last week at their summer school – a small acknowledgement of her efforts and one that has very much been appreciated and enjoyed by us all.

We’re all taking a little time this week to slow down and appreciate life. With a couple of days off planned for the end of the week, I’m winding down to just spending some much-longed-for family time together and am wondering if I can convince the children to give up their technology for at least some of that time too. M is spending the week planning 101 things he wants to do with G before we have our break, whilst G tries her best to ignore him and focus on some gentle revision instead. Mike and I will complete as much work as we can and anything left outstanding will quite simply have to wait until we head back to our desks on Monday morning.

I hope you too get the chance to stop, take a breather and appreciate life in its fullest this week.

20 years of #mischiefandmagic

A lot can happen in 20 years.

In the years since our wedding in December 1999, our family has doubled in size and we’ve moved schools, houses and jobs at a rate that has to be seen to be believed. We’ve survived illness and loss within both our families and our friends, and continue to do so on a daily basis thanks to some long-term diagnoses that have oft-times caught us when we were least expecting them. Chronic illness has become a much bigger part of our lives that we could ever have imagined, but with that has also come some amazing friendships, connections and opportunities that we never even dreamed would happen and that, in many ways, I wouldn’t change for the world.

One such relationship that we have all absolutely come to value is the one with the charity, Over The Wall. They have been a phenomenal support to G and M since both first attended their camps in 2016 and are, in an almost unbelievable stroke of serendipity, also celebrating 20 years since they were first launched by UK businessman Joe Woods following in Paul Newman’s footsteps and the development of the Hole in the Wall Gang camps in Connecticut USA in the late 1980s.

So what are we doing to make this a year of note?

As far as our anniversary goes, I’m hoping that Mike and I might manage a night out somewhere special, though celebrating the week before Christmas can make that difficult as we negotiate the huge numbers of office Christmas parties that we inevitably encounter when trying to book a table anywhere without a lot of forward planning.

And, of course, it will come as no surprise that we are also working hard to raise awareness and funds to support Over The Wall’s ambitious plans to take a record-breaking 1,000 children to camp this year. Mike started the year in style with a sponsored polar dip on New Year’s Day and we’ve turned our hands to a few other things – some old, some new – to see just how much we can raise. We followed the “sparking joy” fashion and adopted a Marie Kondo approach to clearing out our wardrobes, committed to giving a regular amount each month and even stood in the entrance of our local Tesco superstore a couple of weeks ago to collect what we could and spread the word about the camps too.

We’ve taken OTW with us wherever we’ve travelled, sporting branded t-shirts, hoodies and bandanas with aplomb and almost quite literally went “over the wall” with them during our visit to Berlin.

G and M have obviously been a big part of many of our efforts, but are now launching an appeal of their own. Their yearning to do something truly spectacular has unfortunately been somewhat hampered by not yet being quite old enough to participate in the activity of their choice, but they have instead picked the next best option in their eyes and will be taking part in a sponsored indoor skydive at the end of this month.

How can you help?

Well, it goes without saying that any sponsorship you can give would be very gratefully received by G, M and OTW, especially if you can help them meet their fundraising target of £200 – scaled back somewhat from M’s original suggestion of £20,000 – by visiting their fundraising page here.

If you’re not able to donate, but live near a Tesco store in one of the following areas*, OTW is one of their Bags of Help Centenary Grants recipients until the end of August and by adding your blue token to their box, and encouraging friends, family and fellow shoppers to do the same, you will help them receive a significant grant that will be genuinely life-changing. Remember “Every Little Helps”, even if that’s by a blue token!

Finally, sharing the OTW message of #mischiefandmagic with friends and across your social media channels will not only help the charity reach even more of the estimated 50,000 children and young people living with serious health challenges across the UK, but sharing our fundraising page will hopefully bring even more cash donations pouring in to help them achieve their goals not only this year, but in the future too.

Thank you!

*OTW is currently starring in stores across: Perth & Kinross, Angus, Stirling, Fife, Clackmannanshire, South Ayrshire, East Ayrshire, Dumfries & Galloway, Scottish Borders, East Lothian, Midlothian, Somerset (inc Bristol), Wiltshire and Swindon.

Happy Holidays!

We’ve made it!

We almost literally limped to the end of term, but we made it, not withstanding the challenges of mock exams, shingles and Lyme disease. Homework was completed (and handed in), sports day was competed in (and won) and the last day was enjoyed in all the glory of own clothes and an early finish to the day.

We might only be a week in, but already G and M have been busy. We’ve squeezed in a couple of films they wanted to watch, the beach has been enjoyed with G’s godfather and his family visiting from Canada and they’ve kicked off this week by volunteering at our Church’s holiday club for primary-age children during the day as well as taking part in the evening’s youth club for teens.

And there are plans for the weeks ahead: G is spending a week volunteering at their Stagecoach’s summer school, a visit to London to see the musical of their choice thanks to London theatre’s Kids Week and even some fundraising for the fantastic Over The Wall which they’ve planned themselves (more details of that to follow). We don’t have a “big” summer holiday planned having been to Berlin during May half-term, but instead have decided to enjoy our local area as well as the occasional overnight visit to somewhere a little further afield in the UK.

One thing’s for certain, it’s looking to be a busy, fantastic and very happy summer holidays and I hope yours are too!

Go Big or Go Home

June was definitely busy, but it didn’t really prepare me for the double whammy that hit as it was heading out the door and ushered July in in unbelievable style. Many of those who know me personally will have already seen this news and have stated the same thought in a multitude of ways, but I think my sister-in-law said it best what she commented “…M can’t go small, can he?..“!

It all started a few weeks ago when M came back into the house with 4 or 5 insect bites on either side of his waist. This is not an uncommon occurrence in our household as we are fortunate to live at the far end of a small village, right on the edge of farmland and during the summer months, M spends a lot of his free time running around our paddock, jumping on the trampoline and climbing trees. It sounds idyllic, doesn’t it? And, to be fair, it mostly is and the less perfect elements of insect bites and his reaction to cut grass are really small and insignificant in comparison. The bites were itchy and red, but nothing looked especially untoward or unusual, although 1 in particular on his right side appeared to have grown into a reasonably large welt thanks to his incessant scratching of it. I shrugged my shoulders, rubbed some cream on to it to relieve the irritation and promptly forgot all about it.

Fast forward 2 weeks or so and M was now complaining of a small lump on his ribs – the right-hand side once again – which was causing him pain and disturbing his sleep every time he rolled over onto it. After putting up with his incessant moaning, I finally capitulated and booked an appointment for him to see our GP to have it checked. I had spotted that that 1 bite was still in situ and now sporting a rather angry-looking red rash around it, so determined it worth getting that checked out whilst we were there too. Add in the fact that one of M’s classmates had been diagnosed with shingles the week before and I had yet one more thing swirling around the back of my head as something else to be mentioned as well.

As soon as M pulled up his shirt in the GP’s surgery, there was no doubt in my mind that we were going to be in for the long haul. As well as the suspect bite and small lump visible on his ribs, there was now a further red rash over his right ribs, which the GP didn’t hesitate to confirm as shingles with really nothing more than a cursory glance in its direction. He didn’t want to start M on anti-viral drugs straight away, but warned that if the rash spread, I’d need to get him back in as quickly as possible for a prescription – and 2 days later that’s exactly what I did. The small lump proved to be nothing more than an overactive and swollen lymph node likely to be the result of his body desperately fighting off the shingles infection and it was quickly dismissed.

However, it was the bite that really raised our Dr’s eyebrows and after a few probing questions from both him and me, I had a sneaking suspicion that I knew where we were headed with this rash. One week on, a 5-day course of anti-virals to treat his spreading shingles rashes and the third doctor’s appointment of the week, there was no question what was going on with M. The red rash circling his bite had become the most perfect bulls’eye rash and Lyme Disease was diagnosed instantly. Fortunately, we appear to have caught this condition early and we all have our fingers (and toes) tightly crossed hoping that the 3 weeks of strong antibiotics will stop the disease in its tracks and reduce the risk of ongoing problems from it.

We’ve been lucky. M is feeling more tired and achy than normal and has been heard grumbling that this double diagnosis hasn’t secured him any time of school. However, his indomitable spirit in the face of unquestionable challenges has shone through and he has determined that he was going to carry on as much as possible despite feeling truly under the weather. The shingles rashes are mostly gone and the impressive target rash of Lyme Disease is also fading as the antibiotics do their thing. There is no question that it all could have been an awful lot worse, but I do wish that M would start to listen when I say that there really is no need to take a “Go big or go home” attitude to life!

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!

Eating Out with Allergies in Berlin

With breakfast, lunches and snacks sorted out, all that was left to do was to find a few places for dinner whilst we were in Berlin. Mike had done a lot of research on the museums and sights to see during our trip, so I had taken on the challenge to see what options for safe dining there might be. We had great success with the 3 restaurants we ended up eating at, even if none of them could be described as being “traditionally” German, and the allergy information was readily available and easy to read.

Pizzeria Simela: In my extensive internet research this restaurant consistently appeared with excellent recommendations for its brilliant gluten-free offerings of both pizza and pasta and I was delighted to read a more recent review that revealed they could also offer vegan – and therefore dairy-free – cheese. Based just around the corner from the fantastic Denns Biomarkt, this tiny restaurant has just a handful of tables, but is definitely worth a visit and booking in advance! We settled on some fresh tomato bruschetta on GF bread as well as a charcuterie platter for the four of us to share as a starter before selecting pizzas for our main course. Mike, G and M all opted for the GF buckwheat pizza bases, whilst I chose their regular base. It was also great to see a GF beer on offer and Mike willingly gave it a go, giving it a thumbs up. The food was absolutely delicious, there was a huge number of safe options G and M could choose from and there was very little left once my fellow diners had eaten their full. Definitely a winner in our books and one I would highly recommend.

Corroboree: This was a surprise find after a busy day involving 3 museums, a tour bus, lots of walking and even a lunchtime boat trip down the River Spree. We found ourselves at the Sony Centre at Potsdamer Platz, which seemed like a good place to search for a restaurant that might be able to cater reasonably well for even the most difficult of dietary requirements. Corroboree serves Australian-Asian fusion food and provided M with the chance to try some more unusual meats, something he’s been wanting to do for a very long time. The allergy menu I was given was fantastic and really easy to navigate and work out what was safe for both M and G. We were having a relatively early dinner, so G decided she would have a chicken Caesar salad supplemented with a bowl of chips, whilst Mike and I shared a Caesar salad with kangaroo steak as well as a platter for 2 which included Asian chicken, calamari and bruschetta. M, however, was the most adventurous of us all and decided to try the Corroboree platter with dairy-free tandoori chicken, crocodile tournedo and kangaroo filet. He enjoyed almost every mouthful and would happily eat crocodile again, though he’s less sure about the kangaroo as it tasted too much like beef for his liking. Something a little different to what we’d normally eat, but a big hit and a definite thumbs up for the freefrom offerings.

Hard Rock Cafe: It should come as no surprise that our first, and in fact, final meals were at our family favourite, the Hard Rock Cafe. Once again the allergy advice available was comprehensive and the restaurant manager came to discuss our dietary needs with us before the children placed their orders. We were reassured to hear that their GF fries are cooked in a separate fryer and there was no problem with tweaking the children’s choices to make sure they were as safe as they could possibly be. G once again chose the pulled pork sandwich which she first tried in Glasgow and now absolutely loves, whilst M changed his choices up a bit by choosing the pulled pork sandwich on the first night and a chicken and bacon “burger” for our final dinner. Both children were extremely happy with their meals and M was delighted to be able to try a selection of their smoothies too, having quizzed our poor waiter to make sure there was no milk added to them at all! Mike also decided to try their Local Legendary burger, which changes in each restaurant location and in Berlin was a burger topped with a serving of currywurst – the local delicacy of a bratwurst sausage topped with a curry sauce. I’m not sure its a burger I would have chosen, but Mike enjoyed it – and the generous glasses of beer that accompanied it. One of my favourite things about the Hard Rock Cafe is seeing what memorabilia they have on display and here they had a guitar made from a piece of the Berlin Wall with barbed wire as its guitar strings. Once again a restaurant we’d recommend to those eating out with allergies in the beautiful city of Berlin.

Sweet Treats in Berlin

The benefit of picking an apartment or apart-hotel to stay in is that there’s enough of a kitchen to allow us to cook safely for the children and we always travel with our extra suitcase of safe foods to make sure that we have enough of the essentials to see us through our time away from home. We never know what we’ll be able to find food-wise and it’s good to have a plan in our back pockets “just in case”. However, let’s be realistic, who really wants to cook when they’re on holiday? Certainly not me and so we had settled on a good compromise for a short break in Berlin, one that we’ve found has worked well for us in the past and which keeps the children happy too.

Even when we travel in the UK, I always make sure that I have breakfast cereals and cartons of rice milk packed as we’re never quite sure what dairy-free milks we will find and we start our days with breakfast in the room. Thanks to the great location of our Citadines Kurfürstendamm Berlin hotel, there was a Starbucks coffee shop and local bakery within easy walking distance, so Mike trekked out each morning to pick up a coffee for me and some freshly baked pastries and bread rolls for us to enjoy. We had also agreed with G and M that we would take packed lunches out with us daily and so had taken some Bfree wraps for M to enjoy, whilst we had picked up some great gluten-free bread rolls for G in a local supermarket. Both kids love cooked meats, so finding some safe lunch meat in the same supermarket was a great bonus and absolutely delighted them. Sadly, this same supermarket didn’t stock any rice milk, although there was an impressive array of other alternative milks and we ended up getting some soya milk for G and just used our supply from home for M’s daily breakfast.

However, as we found our way to dinner one evening at the fantastic Pizzeria Simela – don’t worry, there’ll be more about this in my next blog post – we stumbled across Denns Biomarkt and as we had a few minutes to spare, I suggested we popped in to have a quick look around. This has to be one of the best spur-of-the-moment decisions I’ve made in quite a while as, not only did their bakery have gluten-free fresh bread available, but there was a great selection of other allergy-friendly options available too, including numerous cartons of rice cream, which somehow made their way into the spare suitcase for our homeward journey! M also took a fancy to the black rice milk that he discovered, though sadly the final product proved not to be as tasty as he was hoping it might be. Here are a few of the freefrom finds that were the biggest hits with G and M:

Friederike from Jute Backerei: Well, who could refuse these amazing looking cookies from this gluten-free bakery? The clear labelling meant I could see from a quick glance that these were gluten-, dairy- and egg-free, so potentially a safe treat for M to enjoy alongside his sister. With the help of Google translate, I scanned through the list of ingredients and was happy to see that whilst they were baked in an environment containing soya, the cookies themselves were soya-free and didn’t contain anything that made me particularly worried about M eating one. They were absolutely huge and, I am reliably informed by both children, also extremely delicious!

Das Eis Triple Choc Ice-cream: Since getting home from Berlin, I’ve discovered that Das Eis is a huge vegan brand of ice creams and sorbets. Made from almond and rice milk, this ice-cream was also soya-free and so another treat that I was happy to let M try – once he had taken an extra dose of his array of anti-histamines and other medicines. There were a couple of flavours available in Denns Biomarkt as well as some other brands of dairy-free ice-cream, but the Das Eis Triple Choc was the only one that was also vegan and soya-free and therefore the best option for M. The children somewhat reluctantly shared the small tub with Mike, but they all agreed it was worth it.

Ben & Jerry’s Non-Dairy Chunky Monkey Ice-cream: After our trip to the DDR museum, M asked if we could go on river cruise to enjoy our lunch and given the glorious day, Mike and I were both more than happy to agree. I had spotted some ice-creams for sale in the museum shop and had somewhat mindlessly looked to see what was available as I waited for Mike and the children to complete their purchases. G is notoriously difficult to buy an ice-cream for when we’re out and about as she won’t eat ice lollies and it’s rare to find a dairy-free ice-cream available for her. So, I was delighted to spot this vegan ice-cream, not least because we also felt we could allow M to try it as well whilst we were on holiday. The small pot was enough to satisfy them both before they tucked into their packed lunches and kept the smiles on their faces for the rest of the afternoon.