In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.
Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.
After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.
From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.
When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.
In November I wrote a blog all about World Diabetes Day 2016 that contained these words:
“The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”
not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.
The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.
The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.
The fear that I might never be able to read or write without aids.
The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.
The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.
The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.
The fear that I might not be able to clearly see my beautiful children’s faces ever again.
Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.
Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.
Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.
So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.
The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.
I am hoping beyond hope that those fears will never be realised, but only time will tell.
Good friends have become a valuable commodity for our family over the years, something I have written about before and no doubt will write about again, but a few events over the last couple of months have made me realise yet again just how important these friendships are to us. In each case, the thoughtfulness of those friends turned what could easily have been difficult experiences into ones that were a little less stressful, something I always appreciate, but most of all at the moment as we deal with new school years, new medical teams and new jobs. Some of these are old friends, people I’ve known since my own school days who still play an important role in our lives, whilst others are those we’ve got to know as G and M build their own relationships with their classmates, but it doesn’t matter how long we’ve known them, they’ve been there to make a difference when it mattered.
The first event was one of the most stressful I’ve had in a long time and even with this wonderful friend stepping in to help out, it was an experience I would have much preferred to do without. My Mum was away enjoying the wonders of Russia, Mike’s parents had flown home to Canada and Mike was back at his work, which is over an hour away from home even when the trains are running in his favour. For once I hadn’t left leaving work to pick up the children from school to the last possible minute and everything seemed to be under control, so naturally that was the point when everything suddenly went horribly wrong. My car wouldn’t start. Not only would it not start, but even with the engine turned off, the electrics seemed to have a mind of their own and the ignition refused to release my key. Even on the best of days this wouldn’t have been a good thing, but poor G had already had to disappear to the school library for an extra hour after school and I was now left with the dilemma of how to get home and get both kids without a car. Thank goodness for a good friend in our village, in the shape of the Mum of one of G’s friends, who kindly agreed to pick up M from his school, send her daughter to rescue G from their school and hold on to them both until either Mike or I was able to take them home. Her calm acceptance of the situation worked wonders on my frazzled nerves – I had by this point already phoned Mike in tears to tell him that not only had my car broken down, but that I was close to breaking down too – and reassured me that there was no need to panic as all I needed to do was get myself safely home. A couple of hours later I’d been rescued by our local garage and I rescued this friend from having to put up with my excitable duo for too much longer. It probably didn’t seem like much to her, I know it’s something I’ve more than willingly done for other Mums in the past, but it really did make a bad situation a whole lot better and helped dampen my panic down to just concerns about how exactly we would manage without a car at all, given we’ve become a 1 car family over the last 6 months (and yes, I can be something of a “glass half empty” person at times and this was definitely one of them). Fortunately, the problem was nothing more than a flat battery and within 24 hours, it had been replaced and normal service had been resumed.
Fast forward a few days to when one of M’s friends brought a smile to his face with a small gesture that made the world of difference to my currently very sensitive lad. As I’ve mentioned recently, M has a well-stocked swap box in the classroom to ensure that he never has to miss out when his classmates bring sweets or treats into school to celebrate their birthdays. M has
become accustomed to swapping out the sweets for a non-edible treat of his choice, but I know that he misses the days when he used to be able to join in just like his friends and could eat a far wider range of foods. He had already brought home a number of Hero Attack trading cards for other birthdays, but I was met at the gate last week by a small boy with the biggest smile on his face. This good friend and his thoughtful Mum had remembered that M can safely eat Foxes Glacier mints and so had taken a handful of those in for M, whilst the rest of the class enjoyed another brand of sweets. M was thrilled about being treated just like everyone else, his teacher was pleasantly surprised by this thoughtfulness and I was touched by this small step to include him in the thrill of the celebration.
Finally, we come to a recent Sunday afternoon spent with old friends and their family enjoying the chance to chat, play and share a meal. This is a friendship that has lasted over 25 years and which made them an obvious choice when we were choosing G’s godparents nearly 13 years ago. We arrived early afternoon allowing the children plenty of time to hang out and play together, whilst the adults enjoyed some much-needed catching up of their own. We talked about recent job changes, secondary school decisions and summer holidays as well as the ongoing saga of M’s health and hospital care; and before we knew it, dinner time had arrived. To our surprise, and M’s absolute delight, this wonderful couple had decided to cook a dinner that was completely M-friendly for us all and so we sat down to enjoy chicken kebabs, chicken goujons, rice, cucumber and some delicious applesauce together. M felt a part of the proceedings in a way that was fantastic to see and when pudding arrived on the table – a safe baked rice pudding with more lashings of the applesauce – he was beyond ecstatic. That simple show of solidarity with our boy was amazing to see and whilst they didn’t think twice about doing it, was a thoughtful gesture that made an impact on us all. M didn’t feel that he was missing out on anything the others was eating and it perhaps gave them a small insight into what he lives with everyday.
As you can see, friendship has many faces and each of them, in their own particular way, makes a difference. I don’t think any one of those individuals thought they were doing anything out of the ordinary or extreme, but without those gestures our life would be far more challenging and a lot less fulfilling and colourful than it is.
I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.
When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.
Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.
What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.
In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.
I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.
That was G’s description of the amazing Borough 22 doughnuts that I brought back for her from my stint as a judge at the Free From Food Awards 2016 at the beginning of February. I had been impressed with the quality of these delicious allergy-friendly treats when I’d tasted them during the Tea-time treats category of the awards and was delighted to find that my somewhat fussy 12 year-old was showing a similar enthusiasm as soon as the first bite entered her mouth. She’s not usually given to waxing lyrical about anything, so these words constituted high praise indeed and the only disappointment was the look on M’s face which he just couldn’t hide, even whilst masterfully trying to celebrate his sister’s excitement with her. It was at that point a tiny seed of inspiration started to sprout and I soon had a cunning plan up my sleeve which I was determined to pull off if at all possible.
My hope was based on the comprehensive ingredients list found on Borough 22’s website and these promising words “We use the following ingredients which, where possible, can be substituted if you have an intolerance to them or are vegan/ vegetarian/ lifestyle conscious…if there are any that don’t agree with you then please let us know. Because we bake to order in small batches we will try our very best to substitute it for something that you can have!” Hardly pausing for breath and most definitely with every part of my body tightly crossly, I penned a quick email to ask if there was any possibility of a doughnut recipe that would cater for M’s particular and restrictive food requirements, stressing that I completely understood that this might be a challenge too far. I included my review from the #FFFA16, told them just how thrilled G had been to taste their doughnuts and then sat back to nervously wait a response. The return email, when it came, led to a lengthy phone-call, a flurry of e-mails and the development of what is rapidly growing into a great new friendship.
Ryan Panchoo, owner of Borough 22, is a truly inspirational man, who had a vision and didn’t just make it a reality for himself and his family, but chose to share it with the greater food allergy community too. It all started with the observations of his food-allergic wife and children that restaurant desserts were usually fruit or sorbet and lacking in quality and imagination, and the dream to create one dessert for everyone; something that tasted great, was of a great quality and that initially was both gluten- and dairy-free. He started with chocolate brownies, created a recipe that received the thumbs-up from family and friends alike and could then quite easily have stopped there. However, in a move that I feel really reflects his determined nature, Ryan decided to experiment with doughnuts and despite never having baked one before in his life, researched and tweaked recipes until his multiple allergen-friendly and delicious treat was perfected.
Ryan tells me that his ambition was never to sell his brownies or doughnuts, instead he simply wanted to be able to enjoy safe sweet treats at home with his family; but his friends had a different idea and in October 2014, Borough 22 was launched. It really is in the tradition of the very best “rags-to-riches” fairy stories to learn that he has never invested millions in some snazzy marketing campaign, instead depending on personal recommendations and his use of social media to spread the word. His colourful and eye-catching Instagram photographs led to a situation that he willingly admits was surreal, when he found himself sitting in a meeting with a buyer for Selfridges, discussing exactly what he needed to do to sell in their prestigious food hall and, even more impressively, how they could help him achieve it.
Nearly 18 months on, Borough 22 is a flourishing business, who sells its wares in several outlets in South East London (The Plumstead Pantry & Good Food Catford) as well as through mail-order via their website. The business with Selfridges is currently on hold as Ryan searches for a suitable manufacturing partner to help him meet demand as he still works full-time as a Project Manager for a property investment company. Once that trickiest of partnerships is settled, the plan is to return to Selfridges and hopefully develop the business even further. I’m delighted to be able to share that Borough 22 was also shortlisted in both the “Teatime!” and “Start ups and Small Producers” categories of the #FFFA16, although everyone, Ryan included, will have to wait until the awards ceremony in late April to find out just how well they did. To shortlist once is impressive, twice simply astonishing, but I’m honestly not surprised as this is a product we are more than happy to endorse and recommend to everyone, food allergies or not.
Even better news for the 7Y2D household’s youngest member at least, Ryan agreed to try his best to adapt his recipe and accommodate M’s complicated food allergies. I decided not to mention our plans to M or G until I knew whether it was a possibility or not and even on the day I took delivery, kept quiet until the doughnuts were safely in my hands. However, as those who know me will attest, my excitement on that Friday was impossible to hide and I spent the day counting down the hours until I could pick my pair up from their respective schools and share the news. I captured every precious moment of the “big reveal” not just for posterity’s sake, or for my blog, but most importantly to share with Ryan himself:
I’m not sure that you really need my words to tell you about M’s response as these photos pretty much capture it all. I will tell you that M was left speechless and in tears when he realised these doughnuts were for him. I will confess that as he squeezed me tight and desperately sought to compose himself, I had to swallow down the huge lump in my own throat and wipe away a few stray, but happy tears. I will gladly share M’s own endorsement that Ryan can “…succeed at whatever he bakes Mum, because these doughnuts are almost better than birthdays..!”
Ryan, you may be a full-time project manager by day, but in my little allergy-sufferer’s eyes, you’re a true superhero by night.
“There are no strangers, only friends you haven’t yet met”
Like most people, I have collected a variety of friends over the last 30+ years, picking them up as I’ve ventured down the various paths my life has taken me. Those friends I’m still in touch with these days span the years: from those I met in the playground and classroom during my first decade to those I survived my angst-ridden teen years with; from the few that are still hanging around following university and my accountancy training to finally that group of “Mummy” friends made since we first found out we were expecting G. In the last 5 years, my friendship group has grown massively as I’ve added to the mix those who are travelling alongside us in our current journey; the fellow EGID Mums and GOSH parents we’ve been privileged to get to know in some of the most challenging of times. These are individuals who really understand the daily struggles and ongoing battles that we survive and are always there to lend a shoulder to cry on or offer words of encouragement or advice when no-one else can. What makes these friends so special is that, in many cases, I’ve never actually met them face-to-face, thanks to the rise of the internet and social media, and yet they are unquestionably available whenever they are most needed.
During M’s recent GOSH admission, we received some amazing demonstrations of support and love from my friends, more than I could ever have expected, and which ensured I never felt on my own. Almost every day I received a message via text or e-mail or FB asking how things were going, sharing news from home and sending love, thoughts and prayers to both M and me. Sometimes those messages would become a conversation and sometimes they simply stood on their own as a reminder that other people were thinking of us. Cards and presents were sent to cheer us both and M’s class wrote their own messages to him, keeping him in touch with all that was happening in school.
We were lucky to receive visits from a couple of good friends: one who we met through FABED and the other from a Mum I met on Rainforest ward during our 2014 stay. These visits really brightened up the long days in hospital and I hope our visitors understand just how much their time meant to us both. Much to M’s disappointment, a couple of other planned visits didn’t happen due to our inability to leave the ward due to Klean-prep, last-minute appointment cancellations and at least one epic failure by me and the other Mum to successfully liaise where we were and when; but most importantly, the thought was there. We also got to meet 2 of those “virtual” friends from on-line support groups, who during the length of our admission were also admitted to GOSH. The ability to finally put faces to names, with a reasonably comprehensive background knowledge already in place and be able to spend time chatting, laughing, drinking tea and commiserating was priceless.
One of my highlights was the opportunity to reconnect with an old FABED friend and fellow blogger, Annie, one afternoon. Her son, R, had been at GOSH for tests that week, but had been staying at the patient hotel with his Dad. On this afternoon, they had been sent up to Rainforest ward for a final meeting before going back home and were given the bed across from M. Whilst Annie, her husband and I chatted away, catching up on news from the last 9 months, M and R renewed a previously fleeting friendship and spent time talking, constructing vehicles, discussing bearded dragons, watching TV and generally just spent time chilling out together.
The most truly astounding show of support came from another Mum that I’ve never met in real life and definitely wouldn’t know if I bumped into her on the street. She is based in London and has a friend who works as one of the visiting art teachers at the GOSH hospital school. Upon hearing that M was confined to the hospital buildings and that I had little time to get out and enjoy much more than quick foods for my meals, she thoughtfully prepared some home-cooked meals that she tailored for my dietary preferences, packaged securely for storage in the ward kitchen and sent in with her friend. These meals could be easily heated in the microwave and were a real treat after days of utterly uninspiring sandwiches and ready meals. As well as this bag of goodies for me including some much appreciated fresh fruit and biscuits, she also tucked in board games and some hand-made get well cards for M.
And it wasn’t just the support in hospital that made the difference: there were people keeping the home fires burning on my behalf too. Both schools kept in touch, asking for updates, talking to G to find out how she was coping with it all and keeping me informed of arrangements for the end of that term and the start of the next. Their Stagecoach principal e-mailed through a suggested directing project linked to the new term’s theme, which would provide some much-needed distraction whilst he was confined to his bed and sent text messages to ask how things were progressing, when we were coming home and wishing us a peaceful Christmas. Finally, thanks to the Mum of G’s best friend, N, Mike could keep those work commitments that he simply couldn’t rearrange as she kindly opened her house to G both before and after school to ensure she was looked after and cared for at all times too.
Over the last couple of months, I’ve been focusing my blog on new recipes, holiday travels and weekend adventures, but of course, in the background of all that, there have been the ongoing food challenges, unavoidable medical dramas and inevitable hospital appointments that are very much part of our everyday life. Those are the bits that take a little longer to process as we adjust our expectations and plans for the coming months, and understandably are not always the easiest parts to share. However, whilst we’re picking our way through the discussions of our latest appointment, I wanted to share this story with you all.
You see, our most recent GOSH appointment was declared “…the best hospital appointment EVER!..” by M for reasons that had absolutely nothing to do with what his consultant or dietician said, discussed or did; and absolutely everything to do with some amazing friends he has met and made since our journey to a diagnosis started over 4 years ago.
We arrived an hour early for our clinic appointment, something that is nothing short of a miracle given the comedy of errors that unfolded as Mike attempted to connect with M and me mid-route as we headed into London by train. Let’s just say that realising your wife and child are not on the train you’ve just boarded and which is now leaving the station, but instead the one that’s just pulling into that self-same station behind you, probably doesn’t rank very highly in Mike’s top ten of successful travel arrangements, but we did eventually meet up and safely got to the hospital with plenty of time to spare! I knew that good friend and fellow EGID Mum, R was also there with her son, A, who has become great buddies with M since we were in GOSH last Christmas and had already tentatively arranged an attempt to meet up if at all possible. As we trundled through to the waiting room, I spotted R across the room and to my delight saw she was chatting with another old FABED friend of M’s and his Mum, L.
These 3 boys were thrilled to all be at clinic together and spent the next couple of hours sharing their electronic devices, playing games and laughing. Being in clinic with 2 good friends helped occupy M’s time and the lengthy wait just flew past as they entertained each other and we parents took the opportunity to do some catching up of our own. All 3 are on extremely restricted diets and represent beautifully the 3 different faces of elemental feeds: A who bravely drinks his daily; M with his NG-tube; and R with his PEG. It was wonderful to see, especially as all 3 were looking fit, well and really no different to other boys of their age. They looked as 3 friends should do: relaxed, happy and comfortable in each other’s presence.
I’ll be honest, as amazing as it was to watch these 3 lads pick up where they had left off, after however long it has been, without missing a beat, it was also heart-wrenching to see them spending time together in the hospital waiting room, knowing that the reason they were there was a chronic illness that has had a long-reaching impact on each of their young lives. But; in that most perfect of moments for them all as they sat united on the waiting room floor, we also realised just how blessed we are to know such amazing people and how important it is for M to believe that he’s not on his own.
If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?
For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.
In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.
My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”
Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.
Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.
This time last week one of my heroes died. I was saddened to hear that Discworld-creator and Alzheimer’s advocate, author Sir Terry Pratchett OBE had sadly lost his battle against this unrelenting disease and I was left with the sense that our world had become just a little less colourful as a result. With typical Pratchett-esque humour, a series of tweets, written in his own incomparable style, announced his passing, taking a lead from one of my favourite of his characters, Death:
I first discovered the Discworld and its diverse cast of characters in the late 1980s and quickly found myself reading, and re-reading, his books as I waited, often impatiently, for the next one to be published. My Dad and I shared a love for the Discworld and my Mum often commented that she knew when either of us was reading one of Pratchett’s books as they caused us both to laugh out loud, something no other author had ever done. Our joint appreciation for Pratchett’s fantasy world is one of my fondest memories and even now, I find myself transported back 20 years, to times spent sharing our newest discoveries in his latest novel whenever I revisit these tales these days.
It’s difficult to explain what made Terry Pratchett’s books just so un-put-downable to me. His clever play on words frequently made me laugh out loud – who can forget Twoflowers’ explanation of an “Inn-sewer-ants-polly-sea” in “The Colour of Magic“? His unashamed use of characters or plots from other authors was delightfully skilled – and the 3 Witches in Shakespeare’s Macbeth were not a patch on Granny Weatherwax, Nanny Ogg and naive Magrat Garlick in “Wyrd Sisters“. His sense of humour was evident in almost every word he wrote. I loved nothing more than waiting to see the plot twists and turns that each new storyline would take and spotting the sometimes obvious, sometimes more oblique references to popular culture. And in every step of my adult life; be it at university, in the work-place, waiting at the school gates or in our EGID world, he has oft become the common bond that starts a friendship or fills a gap in the conversation.
In the days following his death, Terry Pratchett’s fans have given him tribute by taking ideas from his books to create a fitting memorial. The first was a petition asking Death to “Reinstate Terry Pratchett” because Terry himself said that “There are times in life when people must know when not to let go. Balloons are designed to teach small children this” and already nearly 30,000 people have added their names to this request.
The second took an idea from his 33rd Discworld novel, “Going Postal”, which saw the advent of a communication system, somewhat comparable to the internet. When a key character dies, a message bearing his name is sent down the lines on an unending journey to ensure that it is kept alive indefinitely because “A man is not dead while his name is still spoken.” Keen Pratchett fans have developed code that is being embedded on websites to ensure that his name is similarly forever encoded on the internet.
In the past few days, I have started to revisit his books, many of which reside on my book-shelves, and have found myself to be once again amongst old, familiar friends. The humour never fades and with each reading, I discover a small nuance that I hadn’t noticed before. Rincewind, Granny Weatherwax, Captain Vimes and the Discworld have been a part of my life for nearly 30 years and I look forward to introducing both G and M to these adventures in the not-too-distant future.
“No one is actually dead until the ripples they cause in the world die away…”
– Reaper Man