Birthday Wishes

Turns out that October 15 is a popular day for birthdays. Old school friends, work colleagues and even M’s adored Godmother, but we’re celebrating a special day a lot closer to home. Cue Friday night celebratory meals, Saturday evening at the theatre and a Sunday afternoon spent baking a batch of M-friendly Chocolate mayonnaise cupcakes all to mark this occasion.

So, what more needs to be said other than Happy Birthday to our favourite husband and Dad!

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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.

Back to Canada

Getting to Canada was not quite as straightforward as we had expected it to be. As I said in my last post, our decision to go had changed fairly last-minute and whilst I had managed to find a great deal for us to travel via Dublin, we had some unexpected last-minute stress when a work colleague mentioned that the rules had changed and Mike and the children might need Canadian passports to be able to enter the country. Fortunately, after a few extremely stressful hours as I anxiously trawled through the pages of the Canadian High Commission’ website, I discovered that we could apply for special authorisation to travel without the correct documents as there wasn’t enough time to process them before we left.

Bags packed, we arrived at our local airport and made our first pit stop in Dublin. Our layover wasn’t long enough to allow us to venture into the city itself, much to the disappointment of G in particular, so instead we explored the airport terminal and managed to find one of the airport restaurants that could make gluten-free bacon sandwiches for both children to help assuage their inevitable hunger. I had naturally packed more than enough food to satisfy their appetites during the flight, but was pleasantly surprised when the Aer Lingus meals arrived for lunch and had made a reasonable stab at providing the plain rice and chicken I had requested, despite the email I’d received telling us that they simply couldn’t accommodate M’s dietary needs at all.

We had left the UK in glorious sunshine and arrived in Toronto to hot weather, but pouring rain, which didn’t impress the children for their first visit in 5 years. However, M in particular was delighted with the huge Ford Explorer that was to be our vehicle for the duration of our 2 week stay and that went a long way to keep them cheerful despite the miserable weather. We headed north, on our way to Lake Huron and Mike’s parents’ house, stopping overnight in Orangeville for some much-needed sleep before we reached our final destination.

The next 4 days were spent with Mike’s parents in their beautiful town on the shore of Lake Huron and we enjoyed a whole host of activities, doing things we’d never had the chance to do before. Walks along the shore and the harbour; swims in one of the Great Lakes; a boat trip to the lighthouse on Chantry Island; stock car racing and time spent making precious memories with both their grandparents and some of their cousins. We did enough to keep us all entertained, but also enjoyed some great time just relaxing with family.

 

Finding Gromits and Owls

Summer feels like something of a distant memory now and, I have to be honest, it passed in something of a whirlwind once again. As the children get older, we seem to squeeze more and more into every spare minute we can find, creating precious memories that I hope will last a lifetime. This year we had the added bonus of exploring just how to make the most of having introduced bananas into M’s diet as well as pushing the limits with a few more trials along the way too.

Our summer plans were originally to stay close to home, with my Mum helping out by looking after G and M for much of the time whilst Mike and I both worked. Things changed just after Easter and we found ourselves having to bring forward our plans for a Christmas trip to Canada and head back in the summer instead. However, between the end of the school year and our long-haul flight to Toronto, G and M took part in a rowing course and touch-typing course respectively and we also managed to find the time to head to the beautiful cities of Bristol and Bath for a day in each to explore their summer art trails – Gromit Unleashed 2 and Minerva’s Owls. We’ve enjoyed taking part in an incredible variety of sculpture trails over the years, including the Shaun in the City trail in 2015, so it was great to be able to dip into these 2 challenges, although M in particular was disappointed that we didn’t have time to find all of the sculptures that formed part of the trails.

The glorious weather made it a real pleasure to spend time outside on our feet, though M might disagree with me after our very hot day in Bath, where we had to resort to searching out a supermarket to find some allergy-friendly ice-cream and ice lollies to cool us all down. Food-wise, we enjoyed both eating dinner out at our all-time favourite, Wagamama and an idyllic picnic lunch catered by Marks and Spencer. One evening M even commented that it was just like being back in Syros because he was happily walking through the city in the evening wearing shorts and a t-shirt. All in all, those first couple of weeks of our summer were busy, but amazing and a great start to what the rest of the holiday would bring.

Bananas’ Best Bits

One of the nicest things about adding some new foods to M’s limited list, other than the obvious of…well, you know, the addition of new foods to a highly restricted diet…is that just 3 new ingredients have added a huge number of new recipes for him to enjoy. Each one has brought something different to the cookery table, but the best one in many ways, or so M would have you believe, is the mighty banana. I first started playing with recipes back in March for M’s birthday, when I adapted an old favourite to bake a banana bread birthday cake with reasonable success. M wasn’t impressed by what he felt was an overwhelming flavour of nutmeg, so the recipe has had a few more tweaks to reach what is, by M’s exacting standards, almost complete perfection. It’s no exaggeration to say that the introduction of a 3rd fruit has been a game-changer in our household and so I thought I’d share the best bits about bananas with you all:

Banana Bread – it’s never easy to find recipes that can be adapted, and adapted well, to suit M’s restricted diet and these days vegan recipes are almost always my automatic go-to starter for 10. I found a wonderful vegan banana bread recipe on the BBC Good Food website and it took just a few subtle tweaks to turn it into a tasty, gluten-free, M-friendly baked treat that has been a big teatime hit. The latest twist has been to add some dairy- and soya-free chocolate chips to the dough, which makes the cake taste even more indulgent and a welcome addition to his daily packed lunch for school.

Banana & Chocolate Chip cookies – so often my recipes are a response to an unexpected need and these cookies are no different. One of M’s English lessons recently revolved around a tale of children stealing cookies from the staff office and his tutor group were given the opportunity to re-enact the story during a lesson. M came home from school very upset that he hadn’t been chosen to be one of these wannabe thieves and felt excluded because he knew he wouldn’t be able to share eating the cookies once they had successfully been taken. Fortunately, a quick call to the Head of Year 7 and an even quicker Google search found this wonderful recipe, which again required just a few tweaks to make a batch of M-friendly cookies that could be smuggled out of the school office alongside the ones for the rest of his class.

Banana, Apple & Lime Smoothie – one of M’s most precious possessions at the moment is the Nutribullet and Smoothies recipe book that my Aunt has given him as a memory of my Uncle. M feels even closer to him as he peruses the different recipes, trying to work out which he can safely make and enjoy and smoothies have quickly become a staple of his everyday diet. It’s even given him a great vehicle to trial raspberries as a handful added to the fruit mix works a treat. Despite his regular reluctance to get up and get ready for school, M can frequently be found whipping up a smoothie as an alternative to a more normal breakfast and he happily drinks it as he and G walk to school each morning. For a child who has always struggled with what to eat first thing in the day, these smoothies have been a real success story and a welcome break from the stresses that have all too often been a constant part of our morning routine.

 

Quick summer catch-up

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

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!

Grief

We’re almost at the end of term and not just that, but also the end of the school year. As I said in my last blog post, it’s been a time of reflection about M’s health and his first year at secondary school as well as an opportunity to draw breath before we head into the chaos of a busy summer and swiftly followed by the start of G’s GCSE studies. Following the challenging start to 2018, when both Mike and M came down with a nasty bout of Aussie ‘flu, life continued to be incredibly difficult and the saddest of circumstances meant that my birthday, M’s birthday and the 5th anniversary of this blog passed quietly and with far less recognition than would normally be the case. I’ve sat down so many times to try and find the words that could even begin to explain my extended absence from my blog, but it felt for the longest time as if my creative well had run dry and only now am I beginning to emerge from the other side of a deep, dark hole.

Just a couple of days before my birthday, I received a message to say that my Uncle had been taken ill and rushed overnight to ITU. There was no question of my next move when I received that news and fortunately Mike was working from home that day, which allowed me to get home, pack a bag and drive to South Wales to stay with my Aunt for as long as I needed to be there. We were both extremely lucky to be working for understanding employers, which enabled us to adjust our working arrangements and commitments to accommodate the needs of all concerned, most especially G and M. Whilst this sudden downturn in health came as something of a shock, we had actually visited them both the previous weekend when my Uncle was first admitted to their local A&E with a stubborn chest infection that refused to go away. It wasn’t quite the visit we had had in mind, but now we are all so glad that we had the opportunity to spend a little time with him, laughing, sharing news from work and school and that the children could create memories that will stay with them for a lifetime. There are hopefully no regrets that they didn’t have time to come to say a final goodbye as they had that precious time with him before he was taken so ill.

Sadly, despite all our hopes and prayers, there was no coming back from the sepsis that had taken hold so unexpectedly and just a few days later I sat by his bedside with my Aunt, his sister and other niece as he passed away. He was just 63 and had been fighting MS, T2D and other health complications over the last 20 years, but this last battle was just too much for him to win. Mike continued to hold the fort at home, whilst I did all that I could to support my family in both places. The children have grieved in vastly different ways, just as we adults have experienced and dealt with our grief in our own ways and there have been no easy answers or quick-fix solutions in helping them cope with this, their first real experience of death.

My Uncle was, in many ways, a step-in Granddad for both G and M as my Dad passed away 14 years ago this year; and they both had a very close relationship with him. G has grieved quietly, keeping much to herself, whilst M has shed many more tears and been more open in showing his loss. Never was this so clear than on the day of the funeral itself, when G’s only wobble came as the hearse pulled up outside the house and we took our places in the cars. I was travelling with the women of the family, whilst G and M were both due to be travelling with Mike. It was at that point that G’s eyes filled with tears and we walked hand-in-hand to the car, allowing her some time to look at the flowers with the coffin before she travelled on to the crematorium.

In complete contrast, M was happy to travel with Mike and G, but as soon as we all arrived and it was time to go into the service, the tears started coursing down his cheeks and didn’t let up until long after the service had ended. The days since the funeral have had their ups and downs as you’d expect. In recent days, we’ve been able to talk openly about why their beloved Uncle was taken ill and died and they’ve had the confidence to ask us challenging questions, fully expecting us to be honest in our replies. I never really thought twice about whether they would attend the funeral or not, though we did give them the opportunity to say no if they really didn’t want to go, but they both wanted to have the chance to say their goodbyes and I’m glad that they did.

Devastatingly, this was the start of a tragic 6-week period for Mike and me. Just 2 days after my Uncle’s funeral, we found out that a close friend who we have known since Mike first met her over 20 years ago in Canada had passed away suddenly. She had emigrated to less than 20 miles away from us here in the UK with her family a few years ago and Mike and she regularly chatted on the phone. Jenn had turned 42 at the start of February, just 8 months older than Mike and a year older than me, and her 2 children are more or less the same age as G and M. Her sudden death hit us both hard and left us reflecting on just how fragile life can be.

Not long after we heard the devastating news about Jenn, Mike voiced out loud that one thought that had been playing in the background for us both – who would be the third? His throwaway comment was that he hoped a celebrity death would count and there have certainly been enough of those over recent months to more than count as our third. Unbelievably however, it seemed destined that we would be hit by a third death much closer to home and on Maundy Thursday one of my cousins got in touch to tell me that my 99 year-old Gran had passed away quietly at home that evening. Whilst we weren’t expecting this news then, she had lived a long and full life with 5 children including my Dad, 10 grandchildren, more great-grandchildren than I’m confident to count and even the odd great-great-grandchild. I spoke to my Uncle the day after, who was able to share with me that she passed quickly and peacefully at home in her chair.

It comes as no real surprise that death was a topic of conversation that peppered our Easter holidays as both G and M expressed their thoughts, questions and feelings about it and as we all dealt with our grief as best we could. The children were not as affected by their Great-Gran’s death as they were by that of their Great-Uncle as she hasn’t been more that a name at the bottom of a birthday or Christmas card for a few years. They understood that, whilst they didn’t feel particularly sad, I was and gave hugs and kisses whenever they thought I needed them. Helping our children to cope with death and grief both in the immediate, but also as it revisits at the least expected times has been an incredible parenting challenge. Death is sadly very much a part of life that has to be faced and I hope that we have given G and M the life skills to deal with their grief and to empathise with others struggling with it.

Reflections of an appointment

I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.