Tag Archives: Mum

Charlie & the Chocolate Factory Afternoon Tea, One Aldwych

Given the morning had been spent tramping across the length and breadth of London, you can only imagine how delighted M and G were to eventually reach our final destination – One Aldwych Hotel. Ever since I had settled on taking my Mum to the Royal Opera House as part of her 70th birthday celebrations, I knew that I wanted to find somewhere for an afternoon tea which could cater for both children as well as the adults. Our last afternoon tea in London was over 16 years ago when I qualified as an accountant and treated the family to tea at the Ritz, all whilst pregnant with G. It was an amazing occasion and I really wanted to find somewhere to meet our expectations and previous experience if at all possible.

I spent weeks searching the internet and reading reviews before finally settling on the Charlie and the Chocolate Factory afternoon tea offered at One Aldwych. I already knew a little about One Aldwych as Executive Chef Dominic Teague won the inaugural Pathfinder Award at the FreeFrom Eating Out Awards in 2016 and I had read all about the work he had done to create a completely gluten- and dairy-free restaurant without advertising the fact.

Our experience started with my initial contact with the hotel to see if they could cater for both G and M without too many problems. There then followed a flurry of emails between us to establish what safe foods could be prepared, keeping it relatively simple to suit G’s tastes and without pushing M’s boundaries too far. I asked for his meal to be MEWS-free and was impressed when they sent through to me a copy menu for what they thought they could make for both children. With a few tweaks here and there, we ended up with what looked to be an impressive selection of savoury and sweet treats, guaranteed to make this afternoon tea a truly special one for us all.

With one week left to go, there was just enough time to exchange one last email before we headed to London and I was able to order a MEWS-free celebration cake to mark the triple occasion – Mum’s 70th, G’s 16th and our 20th wedding anniversary – all in one fell swoop. I had also received a reassuring email from Executive Chef, Dominic Teague himself, explaining just how they would look after our table and take care to make sure the cross-contamination risks were reduced to as low as they possibly could be. Other than making sure that we had enough medicines with us to ensure that M was well-covered for the extra treats I knew he’d be trying, there was nothing more we could do until we arrived at One Aldwych itself.

On arrival, we were ushered upstairs to the beautiful dining space of One Indigo and quickly seated at our table. My one criticism of our afternoon is that service seemed to take a long time from beginning to end and we had been sitting at our table for a good 5 minutes before the restaurant manager appeared to introduce himself and tell us about what food we could expect to be served. However, everything settled, we then sat back to wait for our food to appear – and that was definitely worth the wait.

My one hesitation had been around the savoury items going to be served for G as she is not the most adventurous when it comes to food and although I had originally asked if she could have just plain GF/DF ham sandwiches, the final menu I had seen suggested that she would be given more than that. A little prompting ahead of time meant I’d agreed with her that she would try at least a mouthful of everything she was served, so you can imagine all our delight when a plate of safe ham sandwiches appeared for her as well as an allergy-friendly carrot puree and houmous tart, all of which she enjoyed with an enthusiasm just about matched by M as he enjoyed an incredible array of unexpectedly safe foods.

The pièce de résistance was, without question, the marvellous dessert selection that arrived for each of us. Cakes, scones, mousse and fruit kebabs made for a truly spectacular display and the selection provided for M was just as impressive as those for the rest of the table. The chocolate and raspberry celebration cake was wonderfully light, airy and delicious, though totally unnecessary given the amount of food we had to enjoy for the meal. My Mum, Mike and I were all delighted to be able to treat both children in such a way and one that we would never have thought was possible 4 or 5 years ago. My thanks go to Dominic Teague and his team at One Aldwych for giving us such a wonderful birthday meal – and for the boxes of leftovers we were able to take to enjoy at home later too!

A Night at the Opera

It’s a big year of milestones in our family this year, with my Mum’s 70th and G’s 16th birthdays as well as our 20th wedding anniversary. You may remember that in September we spent a family weekend at the Bluestone resort in Wales for my Mum’s birthday, but her celebrations haven’t stopped there and last weekend we headed to London for a weekend of stylish fun. The main reason for the trip was to fill a long-held ambition of my Mum’s, to go to the Royal Opera House in Covent Garden. As the only members of the family lucky enough to have been there before are M and me, thanks to his 2 lengthy December admissions at GOSH, I wanted to find something to see that I thought we all would enjoy and, spotting the performance of “Sleeping Beauty” by the Royal Ballet in their calendar, knew that this was the winning choice.

Our weekend started with the train journey to London and then across London to our hotel near Borough Market. We had agreed on an early dinner to give us plenty of time to get to the Royal Opera House, so after a short walk from the hotel to St Paul’s Cathedral and back for Mike, M and me, we dressed in our finest and headed across the road to the nearby Wagamama restaurant for what we knew would be an easy and safe dinner for both G and M. From there, it was a case of hailing a black cab to whisk us to Covent Garden and we found ourselves there with plenty of time to soak up the atmosphere of this incredible building before the performance started.

For anyone wondering what to wear to the ROH, the rule really is anything goes, just as their website suggests. From jeans to evening dresses and just about everything in-between, we spotted our fellow theatre-goers wearing it all. We had opted to dress up with G remarkably, and not too reluctantly, in a black skater-style lace dress, whilst M was suited and booted in a burgundy shirt, grey tie and black waistcoat. My Mum and I had talked beforehand about what to wear and both regretted not having dressed up just a little more. Mike had told me to take one of my long dresses to wear, but I chickened out at the last moment taking a knee-length dress instead and really wish I hadn’t. Similarly, Mum had opted for smart trousers, heels and a long top, but wished she had brought a dress. Obviously, we’ve reached the sensible conclusion that we will just have to go again and wear our finest!

Coats safely deposited in the cloakroom, we wandered about the gorgeous Christmas tree to spend some time in the bar area on the first floor, sipping our glasses of champagne and people-watching before finding our seats in the side stalls. I wasn’t sure how good the view from our seats would be, but I needn’t have worried as we had a great view of the stage and only missed a few bits happening on the very side of it at times. I was also nervous about whether the children, especially M, would survive the lengthy performance – 3 hours including 2 20 minutes intervals – but again, I didn’t need to. Both children were enthralled, even if M did drift off a little towards the end and they were excited to spot different dance steps that they have been learning in their own dance classes. The performance was absolutely incredible and the whole family enjoyed our night at the opera.

Strictly Marvellous!

What better way to kick off the May half-term after an almost unreasonably short term 5 than heading to Cardiff with your dance-mad daughter to finally enjoy her long awaited Christmas present?

What had been planned as a perfect mother-daughter Saturday outing to the Strictly The Professionals tour was somewhat derailed by the cancellation of our “Meet and Greet” session due to the irrefutable demands of 35 nation-wide performances of 50 dance routines in each 2-hour show, but leaving the Arena with an absolutely buzzing G proved that the day itself didn’t disappoint too much in the end. Of course, her perfect view of the intricate and often fast-paced dance routines as well as of her all-time favourite, Gorka Marquez, from our upgraded front row seats might have had something to do with her enjoyment!

The performance itself was truly inspiring, especially to my young and aspiring dancer. Carefully mixed with clips from previous Strictly shows and commentary given by each of the professional dancers appearing on stage, it was a wonderfully crafted show and both G and I loved seeing some of our old favourite routines as well as the incredible new ones. It was also a lovely tribute and send-off to Pasha Kovalev, who will not be returning to the 2019 TV show and G was quickly on her feet to join the standing ovation given to recognise him and his years on the show.

Add in lunch at her restaurant of choice – Pizza Express; a brief shopping trip and a dairy-free hot chocolate before we headed back to the station and it really was the perfect day out for us both.

 

Apologies for the less than perfect photos – but they were the best we could get from our seats and considering the lighting used!

NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – I am an EGID Mum

Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

llifelived

This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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