So much has happened over the last 12 months that I can’t quite believe that we’re marking another year since we lost my Dad. 11 years gone. I love and miss you Dad xxx
Another year gone…
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Category Archives: Family
Shoe Box Appeal 2015
I feel a little as if I’m on “Appeals” overload at the moment, but as both these causes are extremely worthwhile in my opinion, and with deadlines fast looming, I just had to squeeze them both into the same week. The first was the Teal Pumpkin Project that I mentioned in my last blog post and it’s not too late to sign your household up and help provide some peace of mind for parents of allergy children. You can pledge your support through this link and make a big difference with just a few simple steps. If Halloween isn’t your thing, once it is done and dusted this weekend and the pumpkin spice lattes disappear from the coffee shops, your attention will no doubt start to turn towards the final big celebration of the year, Christmas. 
Now, for various reasons including the need to meet a last posting date of October 13th for Canadian surface mail, I am rather spectacularly “on top” of the Christmas present buying this year and must confess to feeling unashamedly pleased with myself! Of course, this level of organisation almost definitely won’t result in a calm approach to December as there are still gifts to buy for the 3 most important people in my life and both G’s 12th birthday and our 16th wedding anniversary need to be celebrated before the big day itself.
The one advantage of being so prepared is that I have been able to focus my attention on preparing some Christmas shoe-boxes for this year’s Blythswood Care Shoe Box Appeal. Our church has been supporting this organisation for a number of years and in years past, G has also helped support this cause through her school. Last year was our first to actually prepare 2 shoe-boxes at home and this year G asked if we could fill 4 – 2 from her and 2 from M – a request I was more than happy to meet. As with the Teal Pumpkin Project, once again the idea is a simple one and will make a huge difference to those who receive one of these boxes this Christmas.
What is the Shoe Box Appeal?
Blythswood Care, as well as many other organisations, ask for donations of filled shoe-boxes, which are sent to individuals and families in need in some of the most destitute countries of the world. They are often the only gift these people will receive this Christmas and bring some seasonal joy in otherwise difficult and dismal situations.
What do you need?
- an empty shoe-box
- some Christmas wrapping paper
- same basic toiletries: soap, toothbrush and toothpaste are the bare minimum
- a pair of winter gloves and either a hat or a scarf, or both
- sweets
- a selection of small toys, make-up, stationery and other bits and pieces to make your box an extra-special present to receive
The above items all need to be new and there are clear guidelines to follow in terms of purchasing sweets and toiletries/cosmetics for them. You can choose who you want to fill the shoe-box for and just need to clearly indicate the intended gender and age of the recipient.
What sorts of things should I add?
The choice of how to fill them is yours and really yours alone. As long as each box contains the basic toiletries and winter clothing requested, everything else is at your discretion. The nice thing is that you can spend as much or as little as you want and can afford. G, M and I visited our local pound shop and I encouraged them to pick out items that they thought their target audience (2 boys and 2 girls of approximately their age and younger) would enjoy opening on Christmas morning. Between them we ended up with bags of sweets, pencils, stickers, toy cars, Lego, Where’s Wally books, small puzzles and toy ponies.
Where do these boxes go?
In the case of Blythswood Care, the shoe-boxes are delivered to mainly Eastern European countries such as Albania, Romania, Bulgaria and Hungary. They are then distributed locally to low-income families or families identified as having a particular need, who are unable to buy gifts themselves and are otherwise unlikely to be able to celebrate the Christmas season.
Why fill them?
In our family, the children have chosen to fill these boxes because they both know how lucky they are to be able to count on a pile of presents to open on Christmas morning. Throughout the year, G has been sorting through bits and pieces in her bedroom and has kept asking to put things to one side to add to our boxes. We’ve taught them that these gifts are really something small that they can easily do and which will truly have a big and lasting impact.
How long do I have to fill my box?
The deadline is as fast approaching as Christmas itself, with many locations collecting boxes by November 6th 2015. If you want details of where to drop off your filled boxes, you can look at the collections schedule here or contact them directly on 01349 830777.
Are there other options?
Of course, there are a number of other charities and organisations out there that do similar work in a whole host of countries and for different individuals during the Christmas period and you might wish to support one of those instead:
- Elf and Reindeer Schemes – Post Pals: supporting sick children and their siblings across the UK
- Family and Elderly Shoebox Appeal 2015 – Link to Hope: gifts for families and the elderly in Eastern Europe
- Christmas Shoe-boxes – The Trussel Trust: for individuals in need in Bulgaria
- SOS Christmas Appeal – Support Our Soldiers: sending festive cheer to members of the British Armed Forces serving overseas
- Rotary Shoe box scheme – The Rotary Club: supporting children and households across Central and Eastern Europe throughout the year, not just at Christmas
Finally, if you want to see more about the difference these boxes make, please watch Blythswood Care’s video:
More than a smile
It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M, following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:
“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”
My garbled response was a variation of my stock answer:
“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”
“That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”
I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 
I pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.
I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.
Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.
The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.
And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.
I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:
“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”
The Beauty of Brighton
Having made the epic journey to Hastings to dip our toes into events of the past, we took full advantage of being near the South coast and decided a side trip to Brighton was in order. Our Sunday started at a slightly slower pace and once the unavoidable homework was out of the way, we jumped into the car to head an hour west to our destination. I achieved the ultimate moment of parenting success, entirely unplanned, 
when G spotted the infamous white chalk cliffs of the area. I hadn’t realised it was something she had learned a little about in geography this term and mentally gave myself a pat on the back for ticking the boxes for both her history and geography classes.
Following what seemed like an army of motorbikes of all shapes, colours and descriptions into Brighton, we found our way to a centrally located car park before heading out on foot. We had managed to park strategically close to the main shopping centre and started our short visit with lunch at what has become one of our all-time favourite allergy-friendly restaurants, Wagamama. As at our home branch, their service here was phenomenal, the attention to detail spot on and we all enjoyed food that we knew would be reassuringly safe for both M and G. Once the most critical part of our day was dealt with, we walked to our final destination for the afternoon, 
the Brighton Pavilion. A new experience for all of us, although I have seen it from the outside before; and what an amazing experience it was.
The children were astounded to see the Indian-inspired splendour of the Royal Pavilion buildings in Brighton – another big tick here as M will be studying India later in the year! – and keen to listen to the audio guides telling them more about the design, build and use of the Pavilion since it was first transformed from modest seaside villa to magnificent palace for King George IV in 1815. M fell in love with the Banqueting Hall with its impressive dragons, life-like lotus leaves and the 30-foot high chandelier, covered in over 50,000 crystals, hanging in the centre of the room. Equally amazing was the music room, which has been painstakingly restored, not just once, but twice since 1975 due to excessive damage caused first by fire and latterly by storm damage. G and M also loved trying to spot the secret doors, behind which were often hidden one of the multitude of toilets in the place or access passages for the servants so that King George wouldn’t see them as they went about their work.
There is currently a photo exhibition about the role the Royal Pavilion played during WWI and Mike and I were fascinated to read about the conversion of this once royal palace to a hospital for troops from the Indian Corps wounded on the Western Front in France and Flanders. As we walked from room to room inside the Pavilion admiring all the artefacts on display, there were often also photos showing how each room had been converted for use during the war. Huge efforts were made to not only protect the historical elements of the palace, but also to make these injured soldiers feel comfortable and “at home” during their convalescence. What struck me the most was a statistic about the number of patients treated during the 14 months it was open (though please forgive me if I misquote as my recollection is perhaps a little hazy): between December 1914 and January 1916, around 2,500 Indian patients were treated and only 18 died. Amazing when you think how horrific many of the injuries suffered by those troops were. Following the Indian military hospital, the Pavilion was then used for a further 4 years as a hospital for British amputees, who not only had wounds treated and prosthetic limbs fitted, but were also then rehabilitated to develop skills to help them in their later lives once the war had ended.
The Brighton Royal Pavilion is a truly captivating and beautiful place to visit, with a fascinating history and it delighted us all. We spent a great couple of hours exploring the rooms and admiring the architecture and I’m glad that we were able to make that stop before heading back home after our busy weekend.
Fitting in a birthday celebration when we can…
Today’s a special day. It hasn’t quite turned out as planned, but then again, things quite often don’t in our household. Presents have been bought and wrapped and cards have been written, but the birthday boy wasn’t at home this morning to open them. I thought we might enjoy a family meal together at home tonight, but Mike has been away on business, so we’ll be lucky if we just about manage a strategically ordered takeaway before 9pm instead. I was even hoping to bake a cake, but work commitments have left me running around a little like a headless chicken this week and unless things improve drastically before that 9pm takeaway deadline, I really don’t think that will happen.
Mike & funny man, Dave Gorman – last year’s birthday pressie. Wonder what this year will bring?
So instead, let me take the “easy” way out and instead wish Mike an amazingly happy birthday! It might not have been the birthday celebrations we’d have chosen, but I hope your day is a good one and G, M and I can’t wait to see you tonight for a mini celebration before bedtime. We love you lots.
Battle of Hastings, 1066 (the 2015 version)
“I can’t wait to tell my class that I was chased by a hawk this weekend when I see them on Monday!”
As you might imagine, with that opening gambit, I couldn’t wait to get home from work to find out exactly how M’s classmates responded to the unusual piece of news that he was determined to share today. I suggested that he might want to explain a little more about our weekend adventures rather than just announcing this out-of-the-ordinary occurrence to the world, but knowing M as I do, I fear the finer details might be missing first time round.
Despite suggestions to the contrary, our weekend was, in fact, spent in East Sussex and more specifically, in Battle at the site of the Battle of Hastings. G has been studying the events of 1066 in her History lessons this term and has shown a real interest in learning about the central characters of this Battle. I have a vivid memory of visiting the battlefield with my parents when I was about the same age as G is now and wanted to be able to create a similar experience for both G and M if I could. What better was to learn more about history than by visiting where it actually happened? I started investigating the Hastings area and was delighted to see that last weekend was staging a re-enactment of the Battle of Hastings in advance of the 949th anniversary of the event itself.
Much to my astonishment, we had a weekend free of any other plans, a rare thing indeed in our household and so we planned for a short East Sussex break, where the Battle of Hastings would be brought to life outside of the classroom and hopefully would become even more real in G’s memory. As always when planning a trip with M, I spent most of Friday rushing around from pillar to post in a mad dash attempt to make sure we had packed everything we could conceivably need during our 2 nights away from home. A slight lapse on my part meant that 3 hours were unexpectedly lost to a forgotten hospital appointment for me and another 40 minutes to training up the new school secretary on how to operate M’s pump, but we got there in the end and as soon as school and Stagecoach were finished, we started our pilgrimage to Battle.
We arrived at Battle Abbey slightly ahead of schedule on Saturday morning and I am so glad we got there when we did. A great tip from one of Mike’s work colleagues meant that we had gone prepared with a couple of folding chairs amongst our possessions and we nabbed ourselves front row seats for the rest of the day. We explored the Saxon and Norman camps set up either side of the main arena, treated ourselves to a few trinkets, drinks and snacks and decided which events we wanted to see. We actually didn’t really venture too far away from the main arena itself as the children were fascinated by all that we could see and experience there. Mike was thrilled to be picked to be part of the first Falconry display and remarked on how surprisingly light the bird was as it landed on his arm. 
The children were enthralled by the impressive weaponry display, which showed the different types of weapons that would have been used by the cavalry and infantrymen of both armies and treated us, in our front row seats, to a frighteningly realistic charge by the opposing sides. For many, the highlight of the day had to be the battle itself, which was acted out in front of us with a mix of live and recorded commentary to talk through and explain the events as they unfolded. I was impressed with G’s understanding of the tactics employed by Duke William’s army and she was able to hold her own afterwards when in discussion with 2 of the men involved in the re-enactment. It was a fantastic day out, the children now both have a greater understanding of this significant historical event and Mike broadened his knowledge of his adopted homeland too!
Oh yes, and M was chased by a hawk, just as he said. Following his in-depth conversation with the Falconry team during the day, they chose him to be part of the second display and gave him the job of dragging the decoy across the field at speed to show how fast and effective the Harris hawk is when it comes to hunting its prey.
The Start of a New School Year
In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.
For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.
And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.
M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. 
Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.
Afternoon tea at the Celtic Manor
At the end of last year, not long after M had been discharged from GOSH, my Aunt celebrated a milestone birthday and my Mum started talking about a trip to the Celtic Manor in Newport for a celebratory afternoon tea. Fast forward 9 months that have taken us even closer to her next birthday than the one we were actually celebrating and with Mike organised at home to do the school-run and sort the children for the day, the three of us finally managed to become “ladies who lunch” as planned. We booked a table for their Autumn Afternoon Tea at 2pm and arrived a little earlier* (*for little, read 1 hour) than necessary due to my Mum’s anxiety of being caught up in the Rugby World Cup traffic and the pressing need to arrive early, no matter where we’re going.
We spent the first 20 minutes wandering the grounds and browsing in the shops before kicking our celebrations off with a glass of prosecco and a chat until it was eventually time to venture a little further to the Olive Tree Garden Room. As a family we are now well-versed in the world of disability and additional needs due to not just EGID and multiple food allergies, but also the presence of T1D, Parkinson’s Disease and Multiple Sclerosis amongst our members. Everywhere we go is assessed on their ability to cater for all these needs and I’m sorry to say that here the Celtic Manor failed at the very first hurdle. The Olive Tree Garden Room is a 
stunning place to relax and enjoy the treat of an afternoon tea, but from every approach it is only accessible by steps and whilst a portable ramp is available, the staff were slow to offer help when it was so obviously needed.
These things aside, we made it to our table in one piece and couldn’t wait to get started on the tempting and extensive menu that formed our afternoon tea. The meal began with a glass of warm Winter Pimm’s – delicious – and the Harvest hamper filled with 4 bite-size savoury treats that tantalised our taste-buds and gave us an inkling to what to expect for the rest of the meal. The detailed menu impressively showed the allergens present in each of the different items on offer and I was pleased to see that gluten-free alternatives were available. On this occasion, we didn’t test their allergy offerings, a real treat for me, but I’d be keen to return to see whether they could cater for G with her gluten- and dairy-free needs and if they favourably compare to the “normal” dishes. 
The sandwiches that followed were equally good and sized perfectly so that we could manage the cakes that came next.
The cakes were a sight to behold and it was really difficult to decide exactly where to start before trying each and every one. It was at this point that we all were finally beaten – well 5 cakes and pastries, however mini, is an awful lot for one person – but the Celtic Manor is obviously well-used to this experience and were able to offer us cake boxes to transport those extra ones home to enjoy at a later time. I cheerfully packed my remaining 2 away and eagerly looked forward to the final part of our tea, the scone. After all the other mouthwatering courses, I couldn’t wait to taste the scone with jam and clotted cream, which has to be the best bit of any cream tea in my opinion and I was confident that this one could be nothing short of exceptional.
Sadly I was very wrong and we were massively disappointed with the freshly baked Cherry Bakewell scones that arrived. The scones appeared to be so freshly baked that they were, in fact, under-done and tasted stodgy and sticky in the mouth. The Cherry Bakewell embellishment was a complete step too far and did nothing to add to the taste experience as it consisted purely of a sticky cherry syrup thinly spread across the top and a few flaked almonds added for effect. I struggled to eat it and gave up half-way through as it really wasn’t edible. To make matters worse, our disappointment with the scones was compounded by the poor quality of the tea served with the meal. I’m not sure who had trained whoever made the tea, but my Mum’s Earl Grey was the colour of a strong builder’s tea when poured and even our request for a second pot and then a pot of boiling water, did little to improve the flavour. In comparison, the coffee I had was fantastic and my Aunt much preferred the coffee to her original and fairly unpalatable English Breakfast tea.
I would love to be able to say that my review ends there, but I just can’t. Scones and tea aside, even though they’re fairly integral parts of any afternoon tea, the rest of the food was delightful and we really enjoyed everything else we had to eat; but – don’t pretend you didn’t sense there was a “but” coming – the service we received just didn’t match our expectations of the Celtic Manor. The staff members were not overly attentive and I found myself almost constantly having to grab someone’s attention each time we needed anything, however small. 
They forgot to take our orders for tea and coffee and excused this surprising fail by blaming it on the “..very busy room..”, even though it was never more than 1/3 to 1/2 full during our visit. I flagged down our requested additional pot of hot water when it was delivered to the next door table, helped myself to extra knives from an empty table behind us when our clean cutlery ran out and even ended up asking the staff to clear our table of empty glasses and dishes to allow space for the cake stands, teapots and cups and saucers still to come.
The last straw really came when I asked for a clean cup for my Mum after her second pot of Earl Grey was delivered to the table and the waitress reached over and removed her cup. Just. her. cup. Not the saucer, not the spoon and certainly not all 3 items together, but the cup on its own and swapped it for a clean one, still swinging the old cup with its remnants of tea sloshing around it from her other hand!
Let me be clear: in no way did this spoil our enjoyment of the afternoon at all and in fact it gave the three of us a fit of the giggles, much to the bemusement of our unsuspecting waitress. We loved our table, even though it was tucked away in a far corner, as it gave us an uninterrupted view of the rest of the room and we all enjoy participating in a spot of people-watching whenever we can. However, given the Celtic Manor is described as a “luxury resort” and has 5-star status, the service was not what we had been expecting or hoping for our birthday celebrations. Would I recommend a visit? Yes, I think, but be warned about their scones and hopefully their service might have improved by the time you get there.
Merlin’s Magic Wand
Most of you will know the company Merlin Entertainments, who own and run attractions around the UK such as Alton Towers, the London Eye, Warwick Castle and Madame Tussauds, to name but a few; but how many are aware of their linked charity, Merlin’s Magic Wand? It’s certainly not an organisation I’d ever heard of and knew nothing about until the start of 2015. This charitable organisation was set up in 2008 by Merlin Entertainments to “…deliver magical experiences to seriously ill, disabled and disadvantaged children across the world…” and focus their work in 2 main areas:
- Magical Days Out at Merlin attractions – over 170, 000 children and their families have been able to enjoy a memorable day out through the provision of entrance tickets and, where necessary, travel grants
- Taking the Magic to the children – recognising that some children are unable to visit due to the nature of their illnesses or disabilities, Merlin has provided areas such as a “Fantastical Castle play area” in the CHASE Hospice, Guildford and a “Legoland play area” at the Kolding Sygehus Children’s Hospital in Billund, Denmark.
At the start of this year, not long after we’d arrived back home following M’s stay in GOSH for his NG-tube and elemental diet, I heard about Merlin’s Magic Wand and decided to investigate a little further. I wasn’t confident whether M would even be eligible for tickets or not, but thanks to their incredibly informative and easy to navigate website, 
I decided to give it a go, working on the principle of nothing ventured, nothing gained. Both children are massive fans of Legoland Windsor and had been clamouring for a visit this year, so I selected that as our number 1 choice and, without saying a word to either of them, sent back the form and sat back to wait and see.
Within a couple of weeks of submitting my application form on-line, I had an e-mail to tell me we had been successful and that 4 entrance tickets would soon be winging their way to me. Unfortunately, a slight delay in their arrival meant we couldn’t use them for our Star Wars trip on May 4th, but the problems were soon resolved, the tickets arrived and I pinned them to our kitchen noticeboard, waiting for the right time to put them to good use. A busy summer has meant that finding that right time to go proved more challenging than we expected and we finally settled on the August bank holiday Monday as something of a “last hurrah” for our summer holidays and before G started her new venture of secondary school.
We set off early on that Monday morning, driving through the pouring rain, confident that, if nothing else, the park would not be too busy, or, at least, not as busy as it might have been if there’d been glorious sunshine. Our travels to Florida last year alerted us to the existence of ride access passes and we were delighted that the same exist at Legoland Windsor. Armed with a letter from our GP confirming the reasons we needed this pass, we headed to guest services as soon as we entered the park. 
This is a “benefit” that has obviously been subject to some abuse over the years and Legoland Windsor has stringent checks in place to ensure that only those who genuinely need this assistance receive it.
Our day there was as fantastic as ever and we enjoyed all of our favourite rides (some of them twice!) as well as trying out the brand new Mia’s Riding Adventure, one that G was desperate to go on. This isn’t one for the faint-hearted and there was a slightly panicked moment when we discovered that M’s body-weight wasn’t quite enough to keep the seat back in a comfortable, but secure position for him ride. With some excellent help from the staff manning the ride, we managed to get M settled in a position that allowed him to breathe before the ride started and the screams from my excited duo began. 
Mike watched from the sidelines as he and spinning rides really don’t get along and waved merrily to us, slightly misconstruing my attempts to flag a staff member down to help as an unusual display of my own excitement about the ride.
Disappointingly we are no longer able to eat on-site as we’ve found that the cross-contamination is too much for M’s sensitive digestive system to cope with and instead we enjoyed a rather soggy packed lunch, whilst watching both shows – the Pirates of Skeleton Bay and Lego Friends to the Rescue. The children were also able to be part of the audience volunteers at the start of each show, which they loved and which has become an integral part of any day we spend at Legoland Windsor. All in all, we had an amazing day out thanks to the generosity of Merlin’s Magic Wand. The charity depends on donations to help make these tickets available to those children who benefit from them and if you want to find out more about how you can help or show support, please visit their website:
Gnocchi revisited
Last year I wrote about my quest to create an all-time favourite of mine in a format that would not only meet all our then allergy needs, but that I also hoped both M and G would enjoy. I successfully tweaked some easy recipes to create an instant winner for dinner-time in our household: gluten-free gnocchi and their sweet potato counterpart. For very many reasons I haven’t ventured back to this delicious meal since M started his elemental diet at the end of last year, not least because it is really time-intensive and when cooking 3 different dishes for a single meal-time is the new norm, simple is often best.
One of the unexpected highlights of our holiday in Cornwall came right at the end of the week as I was browsing the farm shop at the Lost Gardens of Heligan before we headed home. I came across 
a packet of Bionita ready-made and gluten-free potato gnocchi and immediately snapped it up. I couldn’t wait for the perfect opportunity to try them out at home with G and that chance finally came last week, whilst M and I were both fighting off persistent heavy head colds, the peril of going back to school when you have a compromised autoimmune system. The prospect of slaving over a hot stove at the end of a long day really didn’t appeal and these gnocchi seemed to be the ideal option for a quick, easy and delicious meal.
Just as with the “normal” version, these gnocchi take just 2 minutes to cook in boiling water and I served them simply with a sage butter with sweetcorn and pine-nuts that was just as quick to prepare. Within 5 minutes, a steaming bowl of aromatic gnocchi was sitting in front of G and she loved every mouthful of this revisited classic. The packet is easily enough for 3 or 4 meals for G as gnocchi really are surprisingly filling and, as it states that they should be used up within 3 days of opening, I’ve popped the pack into the freezer until the next time. My fingers are now tightly crossed that they prove to be as good from frozen as the ones I made from scratch last year.
7 years to diagnosis 