Category Archives: School

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 going 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! Last 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.

Day 3: Nutrition and teaching the experts

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Back in November, I offered my help to PINNT to write an article for a nutritional magazine on the subject of being a parent to a tube-fed child. I wanted to share our experiences of the last 12 months and, upon reading the questions asked, I felt it was a real opportunity to reach out and teach the medical professionals who work with families like ours. The potential impact of this article is huge as the magazine has a UK readership of over 13,000 health professionals and is the only nutrition magazine that reaches across the nutrition profession.

In addition to virtually every practising dietician in the UK, it is mailed directly to all senior gastroenterologists, all nutrition nurse specialists and all nutrition pharmacists, as well as lecturers, industry professionals, consultant dieticians and students.   For day 3 of Feeding Tube Awareness week, I thought I’d include the transcript of my article here:

When did you first learn that your child would need to be nutritionally supported by enteral nutrition?

After four years of increasing food exclusions and a raft of daily medicines, M was still massively symptomatic from his EC and the decision was taken in November 2014 to move him to an elemental feed. His NG tube was passed in early December.

Reflecting back to this stage in your life, what thoughts and emotions were going through your head?

The possibility of a move to enteral feeding had been on my radar for over a year and I had become increasingly certain that it was the best way to try to ease the ongoing symptoms and pain that he was experiencing. The heartbreak of holding my sobbing child at 3am, with tears streaming down my own face, as I struggled to find the words to bring him the comfort that nothing else could bring at that moment in time, had left me willing to try anything to ease his pain.

It took Mike longer to come to terms with the prospect of feeding M via a tube, but by the time we agreed with his consultant that we needed to give it a go, we both felt that it was the chance to give M and his body some much-needed relief. The short-term plans we’d been following for the past three years had been all well and good, but we now needed a longer-term care plan put into place as we just couldn’t keep limping from one appointment to the next with different problems constantly cropping up and nothing really being resolved. The consultant warned us that the enteral nutrition might not be the answer we were looking for, but we were desperate enough to still want to try it and stubborn enough to believe it would be what M needed.

At the time of your child commencing on enteral nutrition, what support and information where you provided with from health professionals, and did you feel this support and information was enough?

We weren’t provided with any information about enteral feeding beforehand from the health professionals involved in M’s care and I found most of our information came from online support groups, such as PINNT and FABED. Disappointingly, we then had very limited support from the hospital as the dietician and consultant were both keen to get him discharged as soon as possible and ignored my concerns that we had no local support from our home hospital. Fortunately the nursing staff helped me fight his corner and made sure that both Mike and I were relatively confident in how to manage his tube and work his feeding pump before we went home. M was discharged just 10 days before Christmas and I was really concerned that we would have difficulties accessing any support over the festive period – it was thanks to the wonderful support group parents, the hospital nursing team (who gave me their direct phone number on the ward) and our community nurse that we not only survived, but managed to enjoy Christmas as a family in our own home.

Since being on enteral nutrition what type of long-term care and support has your child received from hospital/community health professional team?

We have a somewhat complex 3-tiered support system in place:

The overall plans for his enteral feeding and the slow re-introductions of food into his diet are managed by his consultant and dietician at Great Ormond Street. I speak to his dietician every 3 weeks to review what’s going on and tweak his care; and we see them both every 3-4 months.

His tube changes are done every 6-8 weeks at the CIU (Clinical Investigations Unit) at our local hospital, who have listened to his needs and help make the appointments run as smoothly as possible with the involvement of play therapists to help distract him.

Our community nurse has helped provide training as needed and is regularly in touch to help and advise as we need.

It may be a somewhat “clunky” approach, but nearly one year on, it’s close to a well-oiled machine and works for us.

How has having a child being fed via enteral nutrition affected your family unit as a whole (thinking about siblings, time in hospital, holidays, etc.)?

Having a child with a chronic illness affects family dynamics and adding enteral feeding to the mix just meant a few additional, albeit significant tweaks for us. The regular hospital appointments do interrupt our daily routine, so I work hard to make sure that life is as stable and as “normal” as possible the rest of the time. M obviously has to take time off school for his appointments, so I try to make sure that he doesn’t miss more than is necessary. I do worry that G gets side-lined at times as our focus so often has to be on M and managing his feeding needs. We’ve encouraged her to get involved as much as possible and as much as she wants, and she is now very capable of helping with his feeding pump. She’s recently started horse-riding, which is something M doesn’t do and gives me some time to spend just with her. As for our holidays, in the past we often went abroad, but didn’t feel confident enough to try it this first year with his tube. Instead we went to Cornwall this summer, with our car packed full of all the necessary medical equipment and enjoyed an amazing week away. We’re now feeling much more able to cope and are hoping to go to Portugal next summer.

When thinking about nursery/schooling, have you come up against any barriers or obstacles (if applicable)?

The impact of M’s ever-changing health has been particularly profound over the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force not just for G and M, but for the family as a whole. They were willing to have M in school as normal within days of coming home from hospital and 5 members of staff were trained on the intricacies of his tube and feeds so that he could take part in every planned activity with confidence. The positive attitude of the teaching and support staff has also rubbed off on the children and his classmates have been brilliant at accepting his tube at face value and now don’t even seem to see it.

How and when did you first hear about PINNT?

I first became aware of PINNT through the EGID support group, FABED, and other parents of children receiving enteral nutrition, who all recommended PINNT as a great source of support. I then had an invitation to our local PINNT group’s next meeting.

How has PINNT supported you?

Whilst we were waiting for M to be started on enteral nutrition, I researched and read as much as I could about elemental feeding and NG tubes – most of that information was on the PINNT website and explained it in a really accessible way. I love getting the newsletters and reading about people on all forms of enteral feeding. Similarly Mike has found huge reassurance in learning that there are people out there who have not only lived on enteral feeding for years, but have thrived on it and that moving M to it could be a positive step. It helps knowing that we’re not on our own and that there is always somewhere to get advice and support from those living on enteral nutrition whenever we need it.

If there was one piece of advice you could provide other parents with, who have a child commencing on enteral nutrition, what would this be?

When you first hear that your child needs to start on enteral nutrition, it’s almost inevitable that you will feel a great sense of failure and a huge fear about what the months ahead will bring. It’s so important to remember that enteral feeding doesn’t mean you failed your child, but that their health needs mean they need that extra boost to get them through each day. After nearly a year on his NG-tube, M has become the fun-loving, caring and somewhat cheeky little boy we all knew was hiding somewhere inside him. Feeding him via his tube has become second nature to us and it hasn’t stopped him, or the family, doing anything we’ve wanted to. The best news is that we’ve just enjoyed the most “normal” year of our lives ever.

If there was one recommendation that you could make to health professionals, involved in the care of patients on enteral nutrition, in order to improve patient care, what would this be?

I wrote this impassioned plea to medical professionals in my blog earlier this year and feel it encapsulates what I want to say to all healthcare providers:

For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and when we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly living in fear about our children’s health and life and future, so they don’t have to.

*I can’t let today’s post pass without a nodding acknowledgement that it is, in fact, Shrove Tuesday; the day when many of us enjoy a pancake or two before the start of Lent. I can’t even remember whether we managed to eat pancakes last year as M had only just started to trial foods after his 8 weeks on E028, but there’s a sneaking recollection that maybe my Mum cooked some for G, whilst the rest of us ignored the day to the best of our ability. I’m excited that this year I will once again be able to cook pancakes for the whole family and, just in case you need an allergy-friendly recipe to cook for your loved one, I’ve got the perfect one here. Enjoy!

One boy and his bike

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It will come as no great surprise to anyone who knows us when I say that M is something of a daredevil. A true speed demon who loves nothing more than racing around at breakneck speed, sometimes with a frightening lack of regard for his own well-being or my nerves. I think his attitude to life could well be described as “why do anything at walking pace when you can run?” He’s always been the same and mastered climbing out of his cot and climbing up anything to hand (think window-sills, wardrobes and shelving units) from an early age. It was something of a shock when he swept into our lives like a whirlwind, especially after 2 peaceful years with G, who took a much more relaxed approach to just about everything in her early years.

Despite M’s continuing love of climbing, which now includes any tree he can get a foothold on, and his passion for being constantly on the go even until the wee small hours, he has struggled to come to grips with the more mechanical methods of moving around. His obvious clumsiness as a toddler and unquestionable difficulties in balancing in gymnastics meant that it came as no great surprise when a few years later he was finally diagnosed with dyspraxia and dyslexia. M didn’t particularly struggle with his hand-eye co-ordination, in fact his nursery commented on how impressed they were with his tennis skills at age 3, but fine motor skills, upper body strength and balance have all taken a lot longer to achieve and are things he continues to work on both at home and in school. spark_2-0_action_3 It took a little longer for him to become confident on his scooter, but his determination to succeed on a 2-wheel one, rather than the 3-wheel “easier” option, paid off and earlier this year he saved up enough money to buy himself the new one he’d been eyeing up in the Argos catalogue since last Christmas.

However, the one thing that had continued to defeat him was successfully riding his bike without stabilisers. For years, M has been telling us that all we needed to do was arrange a return visit to Canada so Grandpa could teach him how to ride his bike, just as he had G and the rest of their cousins; and there was little we could do to persuade him that he could actually learn at home. Despite M’s belief that Canada and Grandpa were the key to his success, we’ve continued to encourage him to practice at home and had even attempted removing the stabilisers a couple of times in an attempt to push him into giving it his all, but to no avail. When M had his NG-tube placed at the start of this year, he was initially a little more cautious about all things even vaguely adventurous and after a couple of failed attempts on his bike, it was relegated to a dusty corner of the garage to gather cobwebs.

I’m not quite sure what changed over the summer, but something obviously did. It may have been seeing G and Mike head out on some Saturday afternoon bike-rides, whilst he and I played together at home; it could have been his increasing belief that he can do anything he wants with his tube in place; and without a doubt, his improved balance that is so clearly evident as he scoots around and attempts trick-jumps on his scooter also played a part; but a few weeks ago he finally found the courage to take that last step. It came as a something of a surprise and was his response to my somewhat flippant comment one afternoon. He was chatting away to me as I was pulling the washing from the machine in our garage and talking about Mike’s need to tidy up in there. I told him that in terms of sorting out their outdoor toys, maybe we should get rid of his bike as it was just cluttering up the corner and could be put to better use by someone else. He took it as a personal challenge:

“Ok Mummy, I’m going to get on my bike and ride it now!“

and with that comment, on he jumped and wobbled his way out onto the driveway, with his toes barely touching the ground.

I watched from the kitchen door as M persevered to overcome this challenge that has been his nemesis for so many years. There was a look of absolute determination etched into his brow and he just kept on going until, with G by his side cheering him on, he finally managed to put both feet to the pedals and rode the length of our driveway. Elated with his success, both children shouted out in triumph, summoning Mike and me to watch in amazement as M grew in confidence in front of our eyes and completed his victory lap several times over. Since that day he’s improved in leaps and bounds, with his bike being the first thing he pulls out as soon as he gets home from shutterstock_17311288 school for a few bumpy trips around the garden. We always knew that his premature arrival in the world with the dyspraxia added on top would mean he might take a little longer to master certain skills, but that he would get there in the end; and we were proved right that his refusal to be beaten by anything would eventually lead to an even sweeter success when we least expected it.

Children In Need 2015

More than a smile

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It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M, following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

“That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, I pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success. The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

Battle of Hastings, 1066 (the 2015 version)

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“I can’t wait to tell my class that I was chased by a hawk this weekend when I see them on Monday!”

As you might imagine, with that opening gambit, I couldn’t wait to get home from work to find out exactly how M’s classmates responded to the unusual piece of news that he was determined to share today. I suggested that he might want to explain a little more about our weekend adventures rather than just announcing this out-of-the-ordinary occurrence to the world, but knowing M as I do, I fear the finer details might be missing first time round.

Despite suggestions to the contrary, our weekend was, in fact, spent in East Sussex and more specifically, in Battle at the site of the Battle of Hastings. G has been studying the events of 1066 in her History lessons this term and has shown a real interest in learning about the central characters of this Battle. I have a vivid memory of visiting the battlefield with my parents when I was about the same age as G is now and wanted to be able to create a similar experience for both G and M if I could. What better was to learn more about history than by visiting where it actually happened? I started investigating the Hastings area and was delighted to see that last weekend was staging a re-enactment of the Battle of Hastings in advance of the 949th anniversary of the event itself.

Much to my astonishment, we had a weekend free of any other plans, a rare thing indeed in our household and so we planned for a short East Sussex break, where the Battle of Hastings would be brought to life outside of the classroom and hopefully would become even more real in G’s memory. As always when planning a trip with M, I spent most of Friday rushing around from pillar to post in a mad dash attempt to make sure we had packed everything we could conceivably need during our 2 nights away from home. A slight lapse on my part meant that 3 hours were unexpectedly lost to a forgotten hospital appointment for me and another 40 minutes to training up the new school secretary on how to operate M’s pump, but we got there in the end and as soon as school and Stagecoach were finished, we started our pilgrimage to Battle.

We arrived at Battle Abbey slightly ahead of schedule on Saturday morning and I am so glad we got there when we did. A great tip from one of Mike’s work colleagues meant that we had gone prepared with a couple of folding chairs amongst our possessions and we nabbed ourselves front row seats for the rest of the day. We explored the Saxon and Norman camps set up either side of the main arena, treated ourselves to a few trinkets, drinks and snacks and decided which events we wanted to see. We actually didn’t really venture too far away from the main arena itself as the children were fascinated by all that we could see and experience there. Mike was thrilled to be picked to be part of the first Falconry display and remarked on how surprisingly light the bird was as it landed on his arm. 20151010_155237 The children were enthralled by the impressive weaponry display, which showed the different types of weapons that would have been used by the cavalry and infantrymen of both armies and treated us, in our front row seats, to a frighteningly realistic charge by the opposing sides. For many, the highlight of the day had to be the battle itself, which was acted out in front of us with a mix of live and recorded commentary to talk through and explain the events as they unfolded. I was impressed with G’s understanding of the tactics employed by Duke William’s army and she was able to hold her own afterwards when in discussion with 2 of the men involved in the re-enactment. It was a fantastic day out, the children now both have a greater understanding of this significant historical event and Mike broadened his knowledge of his adopted homeland too!

Oh yes, and M was chased by a hawk, just as he said. Following his in-depth conversation with the Falconry team during the day, they chose him to be part of the second display and gave him the job of dragging the decoy across the field at speed to show how fast and effective the Harris hawk is when it comes to hunting its prey.

The Start of a New School Year

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In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.

For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.

And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.

M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.

“Wherever you fly, you’ll be the best of the best!”

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This is it. After 7 years, and more schools than I care to think about, my beloved firstborn, the beautiful G, is finishing Year 6 and heading off into the next adventure of her school career. We’ve cheered at her last Sports Day, been entranced by the Year 6 production of The Lion King and enjoyed all aspects of the Year 6 camp. We survived the stresses and tears of SATs week (just) and this week celebrated an amazing set of results that we’re so very proud she achieved. Tomorrow is her Leavers service and I’ve no doubt emotions will be high, amongst the parents, even if not with the children themselves. It’s hard to believe that this little munchkin is old enough to go to “big school” in September, but she is and I can’t wait to see what the next steps on her journey will bring:

The quote in the title is from “Oh the places you’ll go!” by Dr Seuss.

It takes a village

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Do you know that quote? There’s a chance you might associate it with American presidential hopeful, Hillary Clinton and her 1996 book of the same title, but in fact it comes from an Igbo and Yoruba (Nigeria) proverb and has a sentiment that is echoed by numerous other African sayings. It recognises the great value of having community involvement in a child’s upbringing, not just for the child and immediate family, but for the extended family and local community too. As I have mentioned so many times before, we are incredibly fortunate to have an amazing community surrounding us, who are unbelievably supportive, and none more so than our fantastic village school.

Since day one, when G first headed in through their gates, we knew that this was a place that would offer our children not just a great education, but also a safe and secure place to grow and develop, all within walking distance of our home. The children have had the opportunity to build strong friendships with others living nearby that will hopefully continue into their teenage years and beyond. In the 2 years that M has been there, we’ve seen time and time again just how invaluable the school community is, not just to M, but to G and to Mike and me too. The impact of M’s ever-changing health has been particularly profound in the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force for us all.

Without the readiness of the Head and other key members of staff to accommodate M and all his needs, we would have struggled to keep his education a priority this year and I doubt I would have been able to continue working. Their willingness to have M in school as normal and to learn the intricacies of his NG-tube and feeding regime has allowed me to stay in my job, confident in the fact that this is a group of people dedicated to including M in every planned activity and who have taken on that intense in loco parentis responsibility without a second thought. This year in particular has tested their mettle with the demands of not just feeding tubes and complex allergy requirements, but of occupational therapy, dyspraxia and dyslexia added to the mix too. His teacher, Mrs M, has been amazing and she approaches every new challenge with great positivity and an unparalleled sense of humour. Even the minor hiccups encountered along the way – non-stop beeping, blocked tubes, leaking pumps and soaking wet clothes to name but a few – haven’t derailed her and that attitude has helped M cope remarkably well with all the changes this year has thrown at him. I cannot thank her enough for being the rock that M has needed during school hours.

Equally, Miss K, G’s lovely Year 6 teacher has been a real blessing to us as a family and to G in particular. She has encouraged G every step of the way and helped build her confidence throughout the year. M’s hospital stay in December was difficult for G as he and I disappeared off to London for 2 weeks and couldn’t be around to help celebrate her 11th birthday or enjoy the end of term build-up to Christmas. What made a big difference was Miss K, who was fully aware of all that was going on, made herself available to G whenever necessary, understood that emotions were high and made allowances when needed, and stayed in regular e-mail contact with me during our stay and also during the Christmas holidays, so she was as prepared for where things stood with M as the rest of us. She is moving on from the school at the end of this term and I, for one, will miss her, especially as I was hoping she would be M’s teacher for his Year 6 year.

It’s not just the teaching staff who have done their utmost to give us the support we depend on, but the parents and children too and this past week I was left speechless by the thoughtfulness and compassion of M’s class. Following his presentation during EGID awareness week, this group of enthusiastic 9 year-olds discussed different ways they could support him and focused their attention on the fact that he has to wear a backpack all morning, which contains his pump and his “food”. This is what happened next:

“We decided, as a class, that we would all wear a backpack for a morning so that we are able to understand a little of what M has to go through each day. Therefore, on Friday 10th July, it would be great if all of 4M could wear their backpack to school and keep it on for the whole morning! If you can make it weigh about 2 and a half kilograms that will be amazing as that is the weight that M carries around each day.”

On Friday I had the privilege of going into school to see this amazing group plus teacher and teaching assistants with their backpacks on and to express my thanks, not just to the children, but to Mrs M and the school for encouraging and allowing them to show their support in this tangible way. His classmates have adapted well to M’s tube and accept it as an essential part of him. They’ve asked questions and been interested in the whys and wherefores about it and then just forgotten all about it and carried on with day-to-day life, which is exactly what M has needed.

There have also been shows of support from parents, including one from a Mum I’d never met before and doubt I’d recognise again. We were travelling back home late from our last GOSH appointment after a long, hot day in London and arrived back at our local train station. As we reached the stairs of the railway bridge, I became aware of a fellow passenger catching up with us and smiled with her as she chuckled at the inane chatterings of my night-owl. I paused to let her go past, but she slowed her pace to match mine and started an unexpected conversation:

“I just wanted to tell you that my children are at the same school as your son and came home and told us all about his presentation. They both raved about how amazing it was and how much they had learned from watching it and asking him questions. I just wanted to tell you how impressed they both were, especially as they now understand a little more of what he’s having to cope with and we all think he’s incredibly brave.”

The conversation carried on until we reached our cars and said a quiet good-night. This for me is the advantage of having not just a child who stands out from the crowd because of his tube, but also a community who is brave enough to have the confidence to speak out words of encouragement to a near-stranger because of a shared experience and the desire to add their voice to offer support.

From helping take G to school early in the morning to having my tubie home for tea; and from working hard with M to improve his handwriting to encouraging G to reach her potential and aim for the stars, our school, its outstanding teachers and the families who go there have helped us out along the way. This academic year has been a tough one, but we’ve survived all the bumps in the road with the loving support of the truly exceptional community that we live in.

Year 6 camp – the final verdict

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

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

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

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

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

7 years to diagnosis

Searching for an answer

Category Archives: School

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Year 6 camp – the final verdict