Tag Archives: friends

Limping towards the Finish line

bucket listDo you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?

World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.'Oh yes we're very proud of him. He's in publishing you know!'

Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.

School book fairs x 2 – Attended and books bought.

M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.

Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!

Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.

A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.IMG_1765

Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.

Dentist and hair appointments – These both happened as planned and really there’s not much more to say.

GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.

School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.

Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.index

Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.

Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.

Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!

Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.

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Happy Easter!

 

A Wild 10th birthday!

This week I’m planning to take a break from any suggestion of a complicated bake – after 3 sets of birthday “cakes” last week and croissants the week before, I really think I deserve it. IMG_1731I have to confess to keeping it simple on the big day itself as M had huge ambitions for the day of his party and so a cake-stand full of rice krispie treats seemed to fit the bill. I did jazz them up a little by splitting the batch in two and adding chopped apple to one half and crystallised ginger to the other. The birthday boy seemed delighted with my choices and with that success firmly under my belt, I moved on to the next phase of my baking challenges for the week: the party cake!

M has been fascinated by the natural world for as long as I can remember, hence the arrival of Leo in our household just after Christmas. He loves watching wildlife programs on television, reading nature-themed books, be they novels or factual, and appears to absorb the facts he hears in a sponge-like fashion, ready to share at any given opportunity. So when Mike suggested a wildlife party for his birthday, M leapt at the chance and immediately asked if I could make a bearded dragon cake for it. I tentatively agreed, with my usual proviso that I couldn’t guarantee anything before the day itself and he would just have to accept it, no matter the end result. I researched and found a company who would bring a selection of reptiles and insects to our party location and would teach the children about each one as well as allowing them to touch and hold them if they wanted. It wasn’t my idea of a perfect birthday treat, but M was hugely enthusiastic and so I booked the party session, having somewhat madly decided to hold it at our house to make life a little easier.

12670399_10153297404071123_3934501200587725837_nParty booked and themed party favours ordered, next came the matter of the cake. For once I decided to learn from previous experiences and didn’t leave decorating the cake to the last moment as I usually do. The prospect of a 2am finish really didn’t appeal, especially if I was battling with creating the perfect bearded dragon cake topper and so planned to start a week earlier, with the hope of finishing at a much more reasonable time the night before. I found some images on-line and, with “Les Miserables” blaring in the background, carefully copied the individual body parts before attempting to put them together. Given Leo’s rather vivid orange skin tones, I chose to make a bright orange dragon and whilst it might not have been the most realistic coloured one, I was thrilled with my crafted copy. I carefully covered and stored it away from peeking eyes, determined that M would be left guessing until the last possible moment.

Fast forward a week and Saturday afternoon found me whipping up a batch of stone grey coconut oil icing to recreate a rock, having already baked a M-friendly pear and apple cake, which was now sitting on a bed of brown sugar “sand”. With icing, dragon and cake now all ready and waiting to be assembled, I turned to the matter of some un-birthday birthday cupcakes for G. As you may remember, for the second year in a row M was in hospital over G’s birthday and we were unable to celebrate the day with her. Last year we held a joint party for them both and had a lot of fun at their Cluedo-themed extravaganza, but I wanted to do something separate for G this year. Taking advantage of our tradition that each child has a friend at the other’s party, 12790894_10153315764351123_4961913402772457111_nwe decided to hold a small event on Sunday afternoon for G and invited her 2 friends to M’s party in the morning as well as 1 of his to hers in the afternoon. Given it was a very much belated birthday celebration, of course we needed more cake and I decided a batch of cupcakes would hit the mark and decorated them with some rather glamorous silver icing and snowflake patterns for my December baby.

10441207_10153315937021123_5876452706470659349_nSunday dawned with the most glorious weather and an anxious countdown to the party starting by M. The 8 boys and 3 girls spent their time racing around our back garden, bouncing on the trampoline and admiring the varied animals that arrived to entertain. M, of course, held all that he was allowed and G beat her fears to hold the tarantula, despite shaking hands and the occasional tear. The cakes were greatly received and M declared my bearded dragon the “best cake ever!

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“Little pockets of heaven”

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.

IMG_3397Ryan 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. 12694884_571032356387193_4099041063554217609_oHis 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. 12717848_563378083819287_7037755747881912271_nI’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.

March comes in like a lion

Ever had one of “those” days? You know, the ones where you’re already insanely busy and barely have time to breathe and yet everything that could conceivably go wrong, does go wrong to an unbelievable extent, plus those few extra and unexpected hiccups and challenges that appear along the way. After the last 48 hours, I appear to be heading into not just one of “those” days or even one of “those” weeks, but more realistically, one of “those” months. The next few weeks promise to be extremely busy and I’m beginning to wonder how I’ll get everything done on time and in the right order. You know it’s a sad state of affairs when we’re only on the third day of the month and I’m already counting down to the start of the next one.

Wales from space, courtesy of UK astronaut, Tim Peake

Wales from space, courtesy of UK astronaut, Tim Peake

The month started with our rather low-key marking of “Dydd Dewi Sant”, or St David’s Day for those of you not au fait with the Welsh language. Fortunately, this simply required some frantic scrabbling around my drawers hunting out the daffodil brooches that the children and I wear every year and remembering to pin them securely to school jumpers before heading out the door. The children were both keen and proud to wear their daffodils, though equally unimpressed that their friends didn’t know why they wearing them and so took the opportunity to quickly educate their classes. If I’d been more organised, I might have posted on the day itself, but I wasn’t and I didn’t, so this is me recognising that celebration of my heritage now.

But after that gentle start to the month, things have already started to ramp up. The next four weeks include:

Gotta love my left-field boy - who better than Ford Prefect from HitchHiker's Guide to the Galaxy!

Gotta love my left-field boy – who better than Ford Prefect from HitchHiker’s Guide to the Galaxy!

  • World book day and required costume x 1
  • parents evenings x 2
  • school book fairs x 2
  • M-friendly croissants (eek!) for French role-play at school with just 3 days advance notice to attempt adapting my MEWS-free recipe
  • Mothers Day
  • riding lessons
  • a 10th birthday (how did he get to be a decade old?)
  • birthday celebrations, including themed party and cake
  • class assembly x 1
  • dentist appointment
  • hair appointment
  • GOSH appointment
  • Easter
  • Performing Arts Exams x 2
  • school play, which translates into costume provision, rehearsals and performances
  • Spa day – a late birthday celebration which will be much-needed as it comes in the middle of the busiest week
  • events linked to school topics which will undoubtedly require some inventive cooking from me
  • preparations for a sibling camp for G, which gives her a week away with other youngsters in similar situations and, more importantly, a week away from M

gin-and-tonI’m sure that there will be things I’ve already forgotten and likewise, there’s no doubt that there will be more items added to my list as March passes by. Needless to say, I will be blogging about many of these occasions and just how I overcome the challenges of taking my M-friendly cooking and baking a step further than I ever imagined possible. Once all of these things are out of the way, it’ll be time for a well-deserved drink and, in case you’re wondering, mine’s a large gin!

Blind Date with a Book

Books HDThere is nothing G loves to do more than read; she really is her mother’s daughter when it comes to that particular pastime. Whenever she has a spare 5 minutes, and even if she doesn’t, you can usually find her with a book in hand, curled up somewhere quiet in the house. In fact, if you ever need to track G down, the best place to start is her bedroom as the chances are you’ll find her on her bed, engrossed in the story unfolding before her and completely lost to the outside world. Mike and M will willingly tell you that I am no different, much to M’s disgust, so the occasional times when it’s just G and me in the house can be surprisingly quiet.

read-for-my-Not long into the new term, G’s secondary school announced that they were taking part in  Read For My School 2016 organised by the Book Trust, which encourages children in Years 3-8 from across the UK to see how many books they can read between Christmas and Easter. Every school that takes up the challenge is given access to the RFMS website and each pupil registered has an on-line diary in which they can record the books they’ve read, make recommendations, write book reviews and even access some books on-line to read. G was excited by this opportunity and has been faithfully updating her reading record on a weekly basis, not least because both RFMS and her school library have offered the incentives of prizes for various achievements to the students taking part. I have asked G to be completely honest about the books she adds to her list and only include those she has actually read since Christmas, telling her that others may be a little unscrupulous when it comes to winning prizes, but that I want it to be an accurate record of her reading habits.

As well as this reading challenge, the school library has been running other events throughout the year to encourage their pupils to read, an approach which has really impressed me. At the start of the school year, G wrote her reasons for wanting to meet author Huw Powell and during 20160210_160919the recent half-term, she penned an acrostic poem as part of another competition to mark Harry Potter night in early February. These initiatives not only encourage the children to read, but also help them develop key writing and literacy skills in a fun way, something which really benefits G as, despite her passion for reading, she struggles to capture her imagination and express her thoughts on paper.

Just before half-term, G came home absolutely buzzing with excitement about the “Book Blind Date”, which she had taken part in during her day at school. This time the school library had wrapped up a number of books and added a tag which simply contained 3 or 4 words hinting towards the theme of the story. G had chosen one which intriguingly stated:

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and was desperate to see what book she had picked. She waited until we got home and then, with great fanfare and both M and me watching, she ripped the paper from the front cover to reveal her selection. Her choice, 20160210_160938“Shipwrecked” by Siobhan Curham, was something she’d probably never have chosen for herself, but this fantastic idea of a blind date with a book really appealed to her and offered her a new author to experience and perhaps a new genre to further explore. I loved this particular event as it grabbed G’s attention and those of her friends, as evidenced by the flurry of text messages that followed the grand reveal as they compared titles, and even appealed to M, who is desperate to know whether he’ll have the chance to take part when he’s in Year 7!

The Bionic Woman

For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

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and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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Day 7: Showing a lot of Tubie love!

This is what this week has been about: raising awareness, educating those around us, supporting all those affected by tube-feeding and showing a lot of Tubie love:

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Day 6: Educating those around us

With the growth of the internet and the increasing popularity of social media platforms as well as the plethora of blogs out there that cover a multitude of topics, the world has become a lot smaller and it’s easier to spread the word and work towards greater understanding. Our family has become adept at educating those around us about EGID, a necessity when even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture. As a quick aside, try living with anyone who is in the midst of an EGID flare and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness. T_2384403_orighe same is true when it comes to feeding tubes as sadly misconceptions are rife and the reasons behind a tube can be as complex and individual as there are stars in the sky. Even with children or adults living with the exact same condition, their symptoms and need for additional nutrition can be vastly different.

Of course, those of us who live with the reality of additional nutritional support and tube-feeding often have the best opportunity to educate those around us about it, but we can’t do it on our own. PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy) here in the UK and the Feeding Tube Awareness Foundation in the USA do an amazing job of supporting families going through nutrition therapy, be that newcomers to the world of tube-feeding or those who’ve been doing it for years. They also provide tools and advice that can be effectively used to educate the outside world about the reasons behind this treatment and how to give easy-to-understand answers to the most difficult of questions.

Last year, M made a video for National Eosinophilic Awareness Week, which he used to help teach his classmates and the wider school not just about EGID, but also about his tube and, to be perfectly honest, I couldn’t think of a better way to help educate my community than sharing it once again:

Day 5: But who supports the supporters?

Family on Blackboard-webWhen you are tube-fed, I think it’s only natural to expect the support of your nearest and dearest, especially in the case of the tube-fed child. In a recent interview about her MS diagnosis, actress Jamie-Lynn Sigler from the US TV show “The Sopranos” said that “when one person in the family has a chronic illness, the whole family has it.” and this really resonated with me. M, I hope, has never needed to question the unfailing and unconditional support that Mike and I will give him along every step of his journey, but it’s not just us who have walked that way with him over the last 12 months. Without any say in the matter, G has been dragged along for the ride too and has been a great comfort and support to M when it matters most, arguments and fallings-out aside. I have talked before about the amazing community that surrounds our family, but G has been something of an unsung hero in the story. Over the last few years we have seen her struggle to cope with the reality of having a chronically ill brother, which has manifested itself in behaviour and attitudes that are less than ideal and which need love and understanding in the most testing of times. We work hard to try to give G as much time as we can, but sometimes that can’t be as much as we’d want, especially when going through a particularly tough time with M. Sometimes siblings need more time than the parents can find, so who is it that can help parents support these young supporters?

Many people will have heard of Young Carers projects, but perhaps will not realise how massive and vital a role these groups can play in families dealing with chronic illness. Young carers are defined as “children and young people who often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.” Being a young carer is an isolating experience as the child may be reluctant to discuss their home life with friends at school for fear of bullying and will often feel that they are in a unique situation. imagesYoung Carers groups try to meet on a regular basis to give the youngsters a much-needed break from the day-to-day, the opportunity to meet other young carers who will truly understand the pressures and strains they are under and the chance to have fun and be a child. Depending on the location, and sadly on the funding available, these organisations may offer evening clubs, weekends away, days out and even holidays as well as friendly advice, information and counselling to both the young carer and their family. In our area, there is also a school worker who runs lunchtime clubs at some of the local secondary schools, hold awareness assemblies and will act as an advocate for the child if needed.

Frequently these youngsters don’t identify themselves in the role of a young carer and it came as no surprise to me that G didn’t as I certainly had never really thought about her in terms of being a young carer until fairly recently. Thanks to a well-placed poster, a stray comment at school and some gentle prodding from a fab EGID friend, I contacted our local Young Carers group, filled in their referral document and sent it off with my fingers tightly crossed that something helpful would come from it. With the most amazing coincidental timing, at almost the same time that I was waiting for a reply, G had spotted a poster in the Year 7 canteen, took a photo on her phone and showed it to me, asking if I thought this was something that she could find out more about. Delighted that she was interested in this support and wanting to encourage her to investigate the opportunity under her own steam too, I agreed that she should contact the teacher named and see what further information she would be given from within school. P1000101She and a close friend in a not-too-dissimilar position have since met with this teacher a couple of times and have been given more information about our local young carers group as well as a list of useful contact names and numbers.

We also had a positive response from my referral form and last week G and I met with Hannah, one of the Young Carers team. She was with us for about an hour and talked to G about all things Young Carers. Having established that G understood what was meant by the term “young carer”, Hannah then took the time to explain how G fit into that role and then they discussed at length just how G helps M and the rest of the family and how she feels about it. I stayed in the kitchen the whole time, but switched between sitting at the table with them and carrying on with preparing feeds, meds, packed lunches and dinner in order to give G the chance to open up about her feelings. I reassured her that we wanted her to be 100% honest about the emotional impact that M’s illness has on her and was pleased to hear her being just that. Nothing she said surprised me in the slightest and I found it a relief to see her open to the idea of the Young Carers groups and all they can offer. She is keen to get started as soon as possible and is just waiting for the paperwork to be processed and the invitation to drop onto the doormat Hogwarts-style!

I am fascinated and pleased to see that there is an increasing awareness worldwide of the lasting impact of chronically ill siblings on children and the need to seek ways to effectively support them as they grow up, often in the shadow of the sick child. Last year I became aware of another fantastic project, this time by Australian photographer, Alexandrena Parker and Rare Voices Australia, entitled The Forgotten Ones, which sought to highlight this aspect of the rare disease community and unsung-hero-greport…to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.” This is just one person’s small step to make a difference to these unfailing supporters, but with the help of projects like The Forgotten Ones and Young Carers, we can all help support our sick children and their unsung heroes.

 

*The wonderful charity, Over the Wall, also provides respite camps for sick children, their siblings and their families, either all together or separately. You can find out more here.

Day 4: Development, both physical and emotional

The last 12 months have seen many changes in M. Some were the physical ones we were hoping for – improved health, weight gain and his symptoms disappearing – and some were an unexpected bonus on an emotional level. When I offered to write the article for PINNT, it was important for me to discuss with M whether he was happy for me to talk openly and honestly about our experiences. Both he and G know that I have been writing my blog for the last 3 years and are fully aware that I protect their anonymity throughout my writing. This article was going to be something very different as I would be using our real names and providing photos of M to be included in the magazine. To my surprise, not only did he give me the go-ahead, but he also asked if he could jump on the family writing bandwagon and include his own thoughts about his year with a NG-tube. For me this showed a real development in his attitude about his EGID, one that reflected a maturity I had seen growing since the tube was passed in 2014. From producing his video for National Eosinophilic Awareness week last May to the multiple presentations at his school and now this eagerness to share his opinions, M has started to grow up and slowly come to terms with the reality of his life with a chronic illness. This is what he had to say:

Living on EN – The patient’s perspective (child)

My name is M, I’m 9 years old and this Christmas will have had my NG-tube for a year. My Mum and Dad and my doctor made the decision for me to have a tube because so many foods were having to be taken out of my diet because I have EGID (Eosinophilic Gastro-Intestinal Disease) and multiple food allergies. When I first found out that I was going to have a NG-tube, I felt upset because I didn’t think that the tube was 11009339_10152614451586123_8225188594845865541_ogoing to make me feel better and I was very worried that I would be teased at school about it.

The first 8 weeks were very difficult as I felt angry and had several melt-downs as I got used to my tube. Christmas was tough because I couldn’t eat anything and I missed having turkey, Christmas pudding and mince pies. I was jealous that my friends and family were able to eat as I really enjoyed eating lots of foods. When I had my birthday a couple of months later, my Mum made me a special cake out of polystyrene cakes and decorated it to match my Cluedo-themed party. My friends thought it was brilliant and the best thing is I got to keep the cake!

At school, all of my friends are very supportive, they don’t tease me and now don’t seem to notice it. Some say they have even forgotten what I look like without it! 20150710_111650Last summer, my classmates decided to wear a 2.5kg backpack for the morning so that they could understand exactly what I go through each day. The whole class did it as well as our teacher and the other teaching assistants.

Twelve months on, I feel much better both emotionally and health-wise. During the first few weeks I didn’t feel very sure about how I would cope, but now I feel confident about having it in. I would still prefer not to have it, but I don’t mind it so much. The first few tube changes were hard, but I’ve become an expert and can now have my tube changed in less than 5 minutes – I even take my old tube out myself.

If I had to give some advice to another child about to have a tube, I would say don’t worry because it’s not as bad as you think it will be. You can do practically anything with it and it will help you feel a lot better in the long-run. My tube doesn’t stop me doing anything and in the last year I have continued to play my cello, performed in a dance display and have even been given my first modelling job.