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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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.

Scotland Photo Round-up 2018

“10 days” seems to have become a mantra for our holidays over the last few years. Be it Portugal, Greece or Scotland, we’ve had some amazing fun, making memories and just spending time together. Here’s the photographic proof:

Homeward bound

With our whistle-stop tour of Scotland almost over, there were just a couple of places left on our hit list before we finally got back home. Mike was keen to detour via the Angel of the North, whilst G was desperate to make Scarborough our destination for the last night of our holiday. The last 2 days we were spending away from home were very much going to be all about the travelling, so it was good to have a couple of pit stops already planned for the necessary toilet breaks, stretches of our legs and escape from the relatively small confines of the car.

We crossed the Scottish border around lunch-time and I just about managed to snap a quick photo of the 3 Scottish flags that were flying to mark our departure. It then took us another 2 hours to travel down to Gateshead, home to the impressive Angel of the North. For those of you who don’t know, this is another Antony Gormley sculpture and one that dominates the landscape albeit in a surprisingly unintrusive way. As always there was a small competition in the car to see which family member could spot the Angel first and as it so often is, M managed to beat G and spotted it first. We parked easily and wandered across the grass to stand beneath its incredible wingspan and just stare up at the clouds. There was a somewhat heated debate between M and Mike as to whether the wings were moving in the wind, whilst G and I left the boys to it and simply stretched our legs out before climbing back in the car for the next part of the journey.

It would be fair to say that most of us slept – except Mike as designated driver thank goodness – over the next few hours, until we finally arrived in Scarborough far too late to do much more than drive rather aimlessly through the town and look at what we could have explored if only we’d arrived a little earlier. It’s still something of a mystery as to why exactly G was so determined to visit Scarborough, but I rather suspect that it has a lot to do with the infamous song, “Scarborough Fair” and not really anything else. She didn’t have a plan for anything she wanted to visit whilst there and M’s rather fed-up quizzing of her motives resulted in nothing more than a cursory shoulder shrug and typical teenage smile.

We were all a little tired, a lot travel-weary and in desperate need of food. Thanks to a speedy bit of googling on my trusty i-phone, I managed to find a well-recommended fish and chips shop that specialised in gluten-free batter and we decided to push the boat out for one last time on our holiday and spoil us all with that little treat. The gluten-free menu at Fish and Chips at 149 in Bridlington was incredible and I would highly recommend to anyone looking for a great allergy-friendly meal. We each chose our fish and accompaniment of choice and then headed to the seafront to sit and enjoy our meal. The portions were huge, but much enjoyed and we finished the evening off with a much-needed and refreshing walk along the seafront. It was a wonderful end to a fantastic holiday, though we were all looking forward to being homeward-bound once again.

Visiting Edinburgh in every weather

There’s been so much going on in the last few weeks and I have a lot to catch you up on, including some fantastic new recipes that have been a great addition to my kitchen, but I wanted to make sure I also took the time to tell you about the last few days of our Scottish adventures back in March. Having started in Liverpool before travelling on to Glasgow and Inverness, via Falkirk and Loch Ness, it was finally time to start our long journey home and we simply couldn’t miss out the Scottish capital city itself, Edinburgh.

Mike and I have some amazing memories of Edinburgh as it was our honeymoon destination back in 1999 and we were keen to retrace some of our steps and share some of the wonderful sights with the children for them to experience too. We had chosen to spend an extra night there and given the weather we had, it was a good thing we had made that decision. On our first full day, we caught the tram from our hotel into the city centre, before jumping on to the City Sightseeing tour bus and heading towards the castle. Edinburgh is an undoubtedly beautiful city, but we struggled to convince G and M of that as we tramped our way up Castle Rock in the cold, sleety rain and rapidly darkening grey skies.

Despite our warm winter coats, hats, gloves and scarves, M got progressively colder and more miserable as we made our way between the different exhibits you can find within the Castle grounds. One of M’s godmothers is married to a lovely military man and both children were keen to learn more about the various Scottish regiments in the regimental museum. First exhibit done, we acknowledged the need for a temporary break from the wintery weather and headed into the cafe, where we enjoyed hot drinks, some safe lunchtime food and were in place to hear the 1 o’clock gun salute.

Having warmed up enough to bring a smile back to M’s face, we convinced them to traipse around a few more exhibits before we headed back down to the bus, stopping on the way for some dry wool socks and a brand new woollen hat for M. We had originally planned to stop at the Scottish Parliament, but the weather had quite literally put a damper on our travels and instead we completed a full loop and a half, before getting off and heading to the Hard Rock Cafe for an early supper.

However, the next day was almost a complete opposite to the day before and much to our surprise, M’s yearning for a day at Edinburgh zoo was an absolute success, despite the lengthy queue to get in, as we enjoyed a beautiful, sunny and surprisingly warm spring day. G and M were particularly keen to see the pandas, but we also had great fun spotting the lions and tigers and watching the penguin parade. We didn’t perhaps do all that we had wanted whilst we were in Edinburgh, but the children enjoyed the time we had there, even the snow, and would love to go back for another visit and the chance to see a bit more when it’s not so cold.

And so it continues….

After last week’s unexpectedly busy week, I was hoping that this week might slow down a bit; or at very least, enough to allow me to draw breath and properly put some thought into my blog posts! However, things often don’t quite work out as planned, especially when you’re me and I’ve found that the roundabout hasn’t quite slowed down enough just yet for me to get off. There’s been little time to stop and smell the roses…or the coffee…the latter of which is probably more apt as it’s been huge quantities of the black stuff that’s getting me through each day right now.

With work full of “stuff” – legal, finance and HR bits and pieces to get my head round; Mike slowly winding down to his last few days in his current job and both children back at home after a fantastic week away for G (hurrah!) plus rehearsals for concerts, fundraising plans to finalise for Over The Wall and some rather meaty health/education issues to tackle for M, I can honestly say I’m looking forward to a quiet-ish weekend to tackle the growing piles of ironing that just don’t appear to be shrinking.

Whilst we’re in the midst of dealing with the challenge of school not really understanding all of M’s educational, physical and mental health needs, I found this wonderful image this week, which truly summaries what I want both him and G to remember and hold on to as they grow up. They really are so much more than their school achievements and exam results #kindhearts #generoussouls #greatfriends

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?

The Hunt for Nessie…and other adventures

Inverness was the location for yet another flying visit on our whistle-stop tour of Scotland, but was one we all enjoyed hugely and it even saw both children expressing a surprising yearning to move North as they gazed at properties in the estate agents’ windows. Inverness itself was not the primary focus of our visit, but rather nearby Loch Ness, which M insisted was a place we absolutely couldn’t even consider missing out when we were practically passing right by the proverbial doorstep. Our time spent there was tight, but we managed to squeeze in everything we wanted to do and even found an unexpected bonus before we left again to travel on to our next destination.

It was whilst we were in Inverness that the snow that had been dogging our every step finally caught up with us, but it didn’t spoil our morning’s trip to Culloden, the site of the final battle of the Jacobite rising in 1745. Despite M’s reluctant traipse around the visitor centre itself, the rest of us enjoyed the interactive displays which carefully talked the visitor through both sides of the story and depicted the events that led to the final battle. It is not a part of British history that either Mike or the children really knew at all and I enjoyed brushing up on my rather scant knowledge too. Mike and G took their time reading the displays, whilst M and I moved at his usual faster pace as I desperately tried to cut through all the facts to capture his interest in the story itself.

Being the Easter holidays, there were some great children-friendly activities available for younger visitors and they appealed to both M and G, who were fascinated to learn more about the weapons used during the battle as well as glimpsing a small insight into the household essentials of the time. We even participated in the family orientated quiz that was held in the last exhibition space and M proved once again that although he moves fast, he’s able to pick up a surprising amount of information in a short space of time and was able to answer with ease questions that left the rest of our side scratching our heads. Once we had finished exploring all that the museum had to offer on the inside, it was time to wrap up warm and venture out onto the snowy battlefield itself. Despite the grey skies and intermittent snowfall, we managed to make our way all around the site, although the return journey back to the warmth was at speed. Neither child had been particularly interested in visiting Culloden in the first place, so to make a full morning of it counted as a real success in our book!

We enjoyed a picnic lunch in the car as we travelled from Culloden to Loch Ness itself and stopped en route to take a few snaps of the beautiful scenery we were passing. Our destination for the afternoon was the Loch Ness Centre and Exhibition, which talked us through the history of Nessie and all of the scientific (and otherwise) investigations into whether she really exists. The children had the chance to investigate the photographs and evidence themselves and drew their own conclusions about whether the Loch Ness monster really exists. It was a fun and interesting exhibition and I particularly enjoyed the last room, which talked about other incidents and discoveries in the Loch Ness area, rather than focus on Nessie herself. A quick jaunt through the gift shop heralded the end of our day out and we headed back to the hotel for some much-needed sleep before moving on once again for the final destination on our tour of Scotland.

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.