“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:
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.
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.
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
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.
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.
May 22: U is for Unite
Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.
Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.
This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK. Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.
Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.
The question is, are you?
I don’t have one, whilst Mike’s the youngest of three. At the end of the day, though they might fight like cat and dog at times, the one thing I can confidently depend on being true is that, no matter what else happens, G and M always have each other’s back. They can criticise the other to their heart’s content, but woe betide anyone who thinks to express their opinion of one sibling in the other’s hearing. Even when one is trouble at home, the other can often be found defending what happened (she only did it because of something I said), offering cuddles to calm down or rushing off to find Cat (for M) or the replacement blanket (for G). Today is #NationalSiblingsDay, so I thought it only fitting to recognise the infallible bond between my 2.
- 2 houses never seen
- 5 schools never visited
- 14 job changes never discussed
- 16 school reports never read
- numerous performances never attended
- too many hospital visits, diagnoses and admissions never shared
- 2 grandchildren, 1 never met and 1 only known for 11 short months
Making the most of our 10 days in Greece was everything we needed it to be this summer. It’s been a big year: with me changing job, G becoming a teenager, M taking SATs and the move to having 2 children at secondary school; and we all appreciated the chance to escape from the day-to-day and spend some precious family time together relaxing and enjoying each other’s company. From the ancient monuments in Athens to the beauty of Syros, Greece was an amazing holiday destination and one place we would love to return to again.