Tag Archives: Fun

Carnival Magic

Never being one to let something get in my way, I’ve tried to instill that same determination to succeed in both G and M. This time last year was the perfect example of this, when M took part in our local carnival parade, albeit in his wheelchair, and G stretched her self-confidence to become one of the dance captains leading their Stagecoach school as they danced their way along the carnival route. Kitted out in their 70s-inspired costumes, with the likes of Tragedy, Night Fever and Disco Inferno blaring out to get not just the kids, but all the spectators dancing too, they definitely captured an essence of Rio de Janeiro on the day.

This year we were back again, though our carnival offering really couldn’t have been more different to the party atmosphere of 2016. G and M were both keen to be a part of our church’s carnival float and relished the opportunity to choose the characters they wanted to portray from that classic fairy tale, Beauty and the Beast. With her long dark hair, G was perfectly suited to playing the part of “Belle” and suited the yellow costume I managed to pull together in the 10 days leading up to the event itself. M in the meantime, conspired with his best friend at church and agreed that he would play “Lumière“, whilst C would be “Cogsworth“. M’s final outfit certainly did the job, though the glorious June sunshine made for one very hot and slightly grumpy child once the parade was over. The carnival float itself looked amazing and the children loved being able to sing along, dance and wave to everyone as it carried them down the street. I love being part of such a fantastic local tradition and can’t wait to see what next year brings for yet another repeat performance.

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Best. Week. Ever.

Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part  (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1]he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1]And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I menuhad been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1]As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me.  M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.

 

And the money kept rolling in…

Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about otwmaking sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.

This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.

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During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. indexThe reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.

I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.

This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.otw

The Dr Who Experience

20150725_094348The same weekend we dipped our toes into the Wagamama dining experience, we also visited the Dr Who Experience in Cardiff. This was a trip that has been a long time in the planning and which was the result of M winning the Grand Prize at the Big Bang Science Fair that we attended at the NEC earlier this year. There has been a fair amount of to-ing and fro-ing to settle on a date that suited all involved, but finally the day arrived and the whole family, plus one extra excited 9 year-old, started on our way. We arrived at Cardiff Bay bright and early and meandered our way in the glorious Welsh sunshine towards the purpose-built centre, following an eager M, his friend N and a slightly less certain G.

 

Our visit started with the interactive tour, which led us on an intergalactic adventure to help 12th Doctor, Peter Capaldi, save the universe. It starts in the Gallifrey Museum and weaves it way through various unmistakeable Dr Who locations before reaching its thrilling conclusion. DWS8LondonCapaldiPix2.jpgDespite the initial reluctance of both M and G, neither of whom are fond of loud noises, darkened rooms or unexpected surprises, we made our way through unscathed and N, a much more avid Dr Who fan than M will likely ever be, eagerly took up the challenges we faced. The experience asks that no photos or filming is done during the interactive tour to ensure there are no spoilers out there for future visitors and we were more than happy to oblige.

Adventure completed, we headed into the exhibition hall, which is a veritable feast for any die-hard Whovian who is lucky enough to visit. I could quite happily have spent a couple of hours perusing the costumes, props and other pieces of memorabilia from the past 50 years of this cult TV classic. I was thrilled to see an original Dalek and various incarnations of the Cybermen, the best-loved classic enemies of the Doctor, placed sympathetically amongst their more modern counterparts. There was a fantastic array of costumes featuring not just those of each of the 13 Doctors seen on our screens, but also a selection from some of their ever-faithful companions. Awaiting discovery around every corner were unimaginable treasures including K9, multiple sonic screwdrivers and the iconic Time And Relative Dimension In Space (better known as the TARDIS to you and me) – both inside and out. We spent a happy hour or so exploring all that was on offer, everyone enjoyed the visit and I think I possibly proved myself to be the biggest Dr Who geek of the family!

Year 6 camp – the final verdict

Last week was a quiet week in our household as G was away at camp and M struggled without his big sister around.  With only one child under my feet, it’s undeniable that the everyday tasks were a little…ok,  a lot easier to achieve in a reasonable time scale and there was a noticeable lack of temper-driven disagreements and raised voices, but there was no mistaking the achingly big G-shaped hole in our family that nothing else could fill.

By bedtime on Monday, we had finally tracked down and ticked off the last remaining items on the list, the bag of food and snacks had been delivered to the safe-keeping of Miss K and I was certain that clothes were named…bags were named…in fact, water bottles, plastic mugs, wash-kits, you name it, everything was named and the all-important, precious piece of her blanket was safely tucked away amongst her things. DSC_0015 G was feeling happier as she now knew she was in the same activity group as one of her best friends and was equally delighted about the teacher who’d be looking after them for the week.  We convinced them into a relatively early night as Tuesday was an early start for us all in order to get to school for 8am, and even M managed to pull himself from his pit and eat some breakfast before we headed on our way.  Those last few moments before G boarded the coach and left for her week at camp were emotionally charged as M stood beside her, with his arms wrapped tightly around her waist and just hugged her quietly, barely admitting to himself, let alone to the rest of us, what was glaringly obvious to see – that he was really going to miss her whilst she was away.  He was by my side as we waved them off and then disappeared into the school playground with his friends, ready for the day ahead.

News took a little time to trickle back to those of us waiting at home to hear what our adventurers were up to, but when the reports finally arrived, everything sounded positive. The kids were having a marvellous time and challenging themselves with lots of new experiences. From clambering over and under logs to wading through deep mud, the activity week was everything they expected it to be.  campTo my delight, G tried her hand at everything, even the dreaded caving and whilst she didn’t venture as far as some of the others, I am thrilled that she conquered her fears and made her way through 2 of the 3 caves they explored, an amazing achievement for someone who had been adamant she wasn’t stepping foot into a cave, no matter what. She enjoyed almost everything they did and was quick to regale us with tales from the week. Her favourite activity was the Woodland Scramble, which involved donning a wetsuit and rolling head-first into a Welsh river as well as dunking her head under a waterfall. Their evenings were filled with headland walks, evenings on the beach, BBQs and a disco before the obligatory mug of hot chocolate and a good night’s sleep.

The week was a resounding success from an activity point-of-view and G chattered for hours once she was home about all she’d done.  Sadly though, it didn’t quite meet my expectations on the food front.  Despite providing a bag full of safe foods to get G through the week, it was returned to me on Friday with very little missing from it.  I gently quizzed her about what she had eaten and was disappointed to learn that whilst the dairy-free aspect of her diet has been well-managed, there were some significant failings from a gluten-free point of view.  G had been assured that the Kelloggs cereal was definitely GF (it’s not), had been given crisps that were covered with “May contains” and her hot chocolate was soya milk laden with cocoa powder and very little sugar to sweeten it: a taste so bitter that she struggled to drink it and after her friends had tentatively taken a sip, they understood why she was so reluctant.  There was a definite lack of inspiration in preparing her meals as GF pasta with tomato and basil sauce appeared to be the go-to alternative for any meal that wasn’t G-friendly and her only dessert was from the snack box I had sent along with her.  11027998_10152859810801123_7685022031085613332_oFortunately for all concerned, G doesn’t suffer extreme reactions to either gluten or dairy, but she was left feeling less than 100% by the time she got home and not just because of the lack of sleep.

In contrast, the only thing of note that happened in our household last week was a complete overhaul of G’s bedroom and whilst there’s still a little more work to do, it’s a room to last her through her teenage years.  And so the week ended as it had begun:  with M and I waiting on the grass bank outside the school for the coach to appear and deliver G back into our arms.

 

Rainy days and Mondays

I suspect we must be like every other family when it comes to unexpected free time or the need to find rainy day activities.  We have lots of discussions about what we could do, followed by M complaining that “there’s nothing to do” or “I’m bored” or “you won’t let me do what I want anyway, so there’s no point in asking” and eventually finishing with a decision that at least 3 of the 4 of us agree on, sometimes, if we’re lucky.  This past weekend was no exception.  Amazingly, there was no football training or game for M, no parties for either child and no school events to contend with as it was the start of the May half-term.

20140428_130100Chalk Wall Snakes & Ladders – this was invented by M and Mike and has been the source of hours of fun for all the family.  One wall of M’s bedroom is painted with blue chalkboard paint and they decided to create a gigantic Snakes & Ladders board on the wall.  It featured some individual-looking snakes as well as ladders of varying lengths and can be changed and adapted as the fancy takes M.  Once designed, they played the game using a dice and coloured chalk to mark their progress on the board.

bananagramsBoard games – I doubt we’re the only family in the world to indulge in a board game or 2 on a weekend afternoon.  The kids have been obsessed with two games recently: the Game of Life: Fame edition, where you’re a fledgling celebrity trying to make it big; and Bananagrams, a game that’s similar to scrabble, but each player works individually to create a crossword grid from their tiles.  The latter has become a new and firm favourite in the household, although M struggles sometimes with the challenge of creating words from his letters.  Even though he won’t always play on his own, he is always more than happy to give suggestions to anyone else playing.

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Egg painting – this is an activity usually associated with Easter as the photos show, but I see no reason why you couldn’t do this at any time of the year.  M was fascinated in seeing how exactly you blew the eggs, whilst G quickly learnt just how delicate the resultant egg-shells were.  They were occupied for a good half an hour or so before they had had enough and had run out of eggs to decorate.  G decided to go for 3 unrelated designs for her eggs, whilst M themed his eggs around a Matador, bull and red cape – don’t ask me, I have no idea where he gets his ideas from, though I’m guessing it must be something to do with his father.  Mike identified the eggs from 3,300 miles away via Skype:  I can only assume he saw something I didn’t.

lightsabersLight Saber battles – nothing overly original, though G, M and Mike appear to have created their own battleground, almost Hunger Games style, called “Schwing Schwang”.  This involves each having their own Light Saber of different colours and indulging in a series of highly complex fight moves as well as striking what I can only describe as their best battle poses. This is all accompanied by hysterical giggling from G and ear-piercing shrieks from M.

spacehopperWashing Line volley ball – This offering is an alternative to regular volley ball.  It involves the use of the washing line strung up between the garage and house, a space-hopper and a sense of humour.  We played in teams, had 5 lives each and had to catch and throw the space-hopper from side to side without dropping it or letting it bounce out of the poorly indicated boundary lines. Challenging, but great fun for a sunny afternoon.

popcornFamily film night (or morning, or afternoon) – Finally, there’s sometimes nothing to beat sitting down as a family to watch a film together.  Our biggest problem was agreeing on which to film to watch, with M and G inevitably choosing the same 5 films over and over again, whilst any suggestion from Mike or me to watch something different usually ended in tears.  So, I came up with a rota system that keeps everyone happy and has seen the children enjoying some films that they never thought they’d like.  Now we take it turns to choose the film and no one film is allowed to be chosen again until we have worked through everybody’s turn twice.  I drew up a grid on a piece of paper that lives near the TV and faithfully record who has chosen the film and what it was.  So far we’ve enjoyed a mixture of Disney, Pixar and classic films and would be hard pressed to say which has been our favourite.

 

A Quintessentially English MayDay Holiday

Picture, if you will, the scene:

Glorious sunshine in a brilliant blue sky with the merest wisps of cloud floating overhead; the gentle strains of traditional music playing in the background; and the company of good friends, all set against the idyllic backdrop of an English stately home nestling in the quiet beauty of the Cotswolds.  What better way to spend the May Day bank holiday than this?

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And, in all truth, the reality didn’t differ too much from this perfect setting.  So, we might have experienced some moments of bitter winds interchanged with the glorious sunshine and the sky might have more frequently been grey than blue.  It’s also true that the music may have been drowned out on occasion by the non-stop giggling and high-pitched squeals of my terrible two and their companions; but the day was fantastic.

20140505_114627We celebrated May Day in a traditional Victorian manner at the amazingly beautiful Sudeley Castle and it encompassed everything your quintessential English May Day should; after all, where else in the world could you combine Morris dancing, chimney sweeps, Punch & Judy, Penny Farthings, Maypole dancing and cups of tea in such a seamless way?  We spent the day visiting with G’s wonderful godmother, C and her fantastic family and enjoying everything Sudeley had to offer.

 

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Who knew that M would prove to be quite so adept at dancing round the Maypole, astounding and delighting the Morris dancers, who couldn’t quite believe he’d never done it before: and we couldn’t have picked a better place to visit for G, who was enthralled with the Tudor history as it’s her topic for the term.

We enjoyed a peaceful and amazing day discovering this hidden treasure and wouldn’t hesitate to make a return visit when we’re next in the area.