Tag Archives: school

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

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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?

Scottish Engineering

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

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

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

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

#NEAW2018: E is for Engage

May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

And I’m back!

You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Daddy’s new toy

Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.

All Different, All Equal

This week is Anti-bullying week and this year the campaign has adopted the tagline “All different, All equal” to promote difference and equality in schools. As the Anti-bullying Alliance’s website states, the idea behind this is to “…help children and young people celebrate what makes them, and others, unique and help them understand why it’s important that every child feels included in school able to be themselves without fear of bullying...” This has struck a particularly resonant chord with me as feeling different to classmates is something that not only do I recall from my own school days, but something I am aware both G and M have felt over the years.

For me, and let me be brutally honest right now, I hated every moment of living with T1D as a teen. Not only was I having to deal with the challenges of impending adulthood and puberty like all of my peers, but my T1D added another layer to the emotional mix that I really didn’t want to have to face. At school I felt like the odd man out. I didn’t really know anyone else my age with T1D and I was the first diabetic in my school. I suffered extreme teenage angst about not being able to buy sweets and chocolate from the break-time tuck shop and that seemingly small thing became a massive problem that I struggled to overcome. My friends accepted my differences far more readily than I did and yet I felt alienated from them. My own anxieties and poor self-image became mountains I just couldn’t scale, particularly when some of the other girls in my school year began to exclude me from friendships that had been there since I was little and threw cruel words in my direction which hit incredibly deep.  Whether they had truly identified my lack of self-esteem as an easy target for their unkind comments and actions or not, I can still recall just how devastating that time in my life was for me. I’m sure that I was not on my own with those feelings, but I felt isolated in a world that seemed to be quite happy without me.

Sadly, G struggled similarly during her Infant school years when so-called friends who had helped ease her move to a new school, discovered that her health issues could be used as a taunt against her and caused her unbelievable emotional pain. Thanks to a fantastic and supportive Year 2 teacher, G was encouraged to tackle the bullies and their behaviour head-on and she learned to stand up for herself, something I didn’t learn until I was much, much older. I know that her gluten- and dairy-free diet still makes her feel too different to the rest of her tutor group for comfort and she has struggled with sticking to the restrictions, especially when her friends are enjoying treats that she would love to be able to eat. We’ve worked to fill her lunchbox with foods and snacks that make her feel a little more “normal” and a part of the crowd, and I will continue to hope that this doesn’t become a cause for bullying as she moves her way through secondary school.

Likewise, M’s complex medical needs have left him being subjected to cruel words and unkind actions in the past, something that is not unusual in the world of chronic illness. Whether it is an obvious physical difference, or something more hidden like T1D or allergies, the sad truth is that children can, and will, be cruel. All children are fighting to find their place in the world and will look to find their footing without regard for those surrounding them and especially not for their feelings. As parents we need to teach our children about the beauty in diversity and encourage them to be kind in their thoughts and deeds. My children are wonderfully unique as are their friends and that is something to embrace wholeheartedly and without reservation. This year I will be making sure that they understand the truth in these words: All different, all equal.

Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you