Tag Archives: friendships

There are no strangers…

“There are no strangers, only friends you haven’t yet met”

W.B.Yeats

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.friendship-childhood-1024x769

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 shhh-gin-and-tonic-in-disguise-mug-p2968-4246_imagethose “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.Picture2

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.

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That’s what friends are for

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 indexeverything 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.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

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.

“Magic never dies. It merely fades away.”

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.

tPratchettIt’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.x-gnu

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.

luggage

“No one is actually dead until the ripples they cause in the world die away…”

– Reaper Man

A Super Tubie of my Own

Courtesy of feedingtubeawareness.com

Courtesy of feedingtubeawareness.com

This week is #feedingtubeawarenessweek, a week that our family is embracing with every ounce of our being this year.  Last year I wrote about our 2 previously brief encounters with a NG-tube, knowing that there was an ever-present chance that M might end up needing one at some as-yet-unspecified point in the future.  Just 12 months on and the state of M’s health due to his EGID means that a NG-tube is now part of our everyday family life.  The aim of the campaign this year is to dispel the myths and misconceptions that surround tube feeding and to show that adults and children can live their lives and have fun with the tube in place.  A tube is often the path to improved health and development and should be embraced as such by us all.  Their theme is “The truth about tube feeding”.

Picture1M’s friends and class-mates have accepted it as very much part of who M is and have been amazing at looking out for him at every turn without leaving him out of their games.  One friend was so intrigued by the tube and how it worked that I spotted him peering up M’s nostril to see where the tube went, just before M opened his mouth wide and pointed out that the tube could also be seen at the back of his throat – how I love the honest interest of 9-year old boys!  He was more bothered by the Year 3 children at school, who he often caught staring at his tube, but he developed his own coping mechanisms and when asked what “that” was – a question often accompanied by a finger pointing towards his nose – he started telling them it was “…nothing, but a mere figment of your imagination…”, before walking off, leaving in his wake a stream of very confused 7- and 8-year olds.

In light of all this, I was chatting to M this afternoon about his tube and people’s attitudes towards it.  I was interested to find out how he feels about strangers staring and what response he would want them to give instead.  His reply fascinated me as it expressed clearly how much more awareness is needed about tube-feeding and the impact had on those living with a tube. He didn’t mind the idea of people asking me about his tube and the reasons for it, but he isn’t yet comfortable with having to deal with those questions himself.  However, the most telling statement was this one:

“Adults should know not to stare, but sometimes they do and I don’t know why”

and that, in turn, made me think about how I feel about M and his NG-tube.  Hospital, home and support groups all exist within a protective bubble, where nothing is unusual and normal is defined by each individual and their particular needs.  It’s only when you go out into the outside world that you suddenly come up against opinion and prejudice and the harsher side of life; against people who don’t understand that this tube is bringing nutrition and healing to my child and who find themselves unable to pull their eyes away from the tube stuck to the side of his small face.

Courtesy of timemanagementninja.com

Courtesy of timemanagementninja.com

We’ve been lucky and haven’t experienced negative comments or unwanted interest.  Yes, I’ve seen the intrigued looks or double-takes as passers-by register his tube, and I’ve received the sympathetic smiles from other parents as they’ve watched me attaching his pump or silencing the alarm, but nothing more.  We’ve been fortunate to have the most amazing support from the families and friends who are part of FABED, many of whom have been in the same boat at one time or another and know how it feels to be suddenly following a slightly different path through life than the one we thought we were on.

Today, I found an article written by Traci Nagy, the founder of the Feeding Tube Awareness Foundation, in 2013 to discuss the importance of feeding tube awareness and thought I’d share with you this excerpt that sums up for me just why awareness matters so much to families like mine:

“It matters that people understand something about feeding tubes other than Terry Schiavo or that silly KE diet.  It matters that they know there are well over 200 medical conditions and diseases that can lead children to need extra nutritional support through tube feeding.  It matters that they realize that these conditions aren’t always visible, and that looking “normal” doesn’t mean there isn’t more going on inside.  It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on your own…for now.  It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.”

20150208_181917So, this week we’re the family proudly sporting the “I love a Tubie” t-shirts accompanied by the live-wire that is our very own “Super Tubie”.  Stop and say hello and don’t be afraid to ask me questions, but let M get on with whatever he’s doing.  We’re hoping to raise awareness and are happy to start in our community, after all, we know that every journey begins with a single step.

How to survive a hospital stay – the Parents Edition

Courtesy of yoast.com

Courtesy of yoast.com

When M was admitted to GOSH for a week for repeat scopes back in October 2013, I turned to the wonderful support network that is FABED and asked for some tips on the essential things I needed to take to get us both through that week.  The resulting list was my parent’s survival guide, a resource I found myself turning to once again before our most recent admission.  However, the one area I didn’t cover in that survival guide was what I did to get through those endless hours, especially when M was otherwise entertained or busy at hospital school and my lovely friend, F pinged me an email all the way from Canada to make this very point.  She had her own set of questions about what I’d got up to whilst M was in GOSH, telling me what I’d missed from my previous posts and I thought I’d share with you all my curiosity-satisfying answers.

Where did you sleep? – I do so hope you didn’t need a hotel

7176037017_45f555b6cc_zNo, no hotel for me, though actually there were times when a hotel room would have been invaluable.  I slept next to M’s bed in a modern version of a medieval torture device: a chair that supposedly converted to a bed, though I think sleeping on a mattress on the floor, or even just the bare floor itself, might have been more comfortable.  There were definitely some mornings when I would have killed for a good night’s sleep or the opportunity for a long soak in a hot bath, but sleeping in “the bay” with 3 other patients including 1 baby meant that my nights were often disturbed.  M’s cubicle contained 1 of the 2 sinks for the 4 beds, which meant that one notable night, I had doctors, nurses and parents trooping through past M’s bed in a steady stream during the early hours as they needed to wash or sanitise hands and access sterile gloves.

The long-term gastro ward is shockingly out-dated and the facilities don’t meet the needs of the patients or their parents.  Unbelievably there is just one bathroom for 16 beds and only 2 other toilet cubicles, so you were constantly having to keep an eye on the bathroom to make sure you could dash in there before it was in use again.  Given this was the location of the height chart too, you can imagine just how in demand that single room was.

What did you eat when you were there? (I can only imagine this expense adding up if you were buying all your own meals)

Courtesy of mirror.co.uk

Courtesy of mirror.co.uk

The expense certainly did add up as I had to provide all food and drink for myself during the admission.  The small kitchen had a fridge which parents were able to keep food in, but I often found myself heading out each day to get some fresh air as well as my meals for the day.  There was also a microwave and crockery and cutlery, so that did make having a hot meal a little easier.  I kept some bread and crackers for breakfast and then would go out to buy sandwiches, ready meals or other snacks for the rest of the day.  There are several supermarkets in the vicinity, so there was reasonable choice, though the largest shop is a Waitrose, which definitely didn’t help with the cost.

I didn’t really eat out too much, though I took G out for meals whilst she and Mike visited and I treated myself to the odd coffee or hot chocolate mid-morning from one of the nearby coffee shops.  I also had a really lovely dinner out with one of my fellow Mums on the ward.  We headed across the road from the hospital to a small Italian restaurant and enjoyed some delicious food, great conversation and a small glass of wine each, whilst the boys were under the watchful care of the nurses!

How did you pass time? – Surely M didn’t need you every second of the day?

The first few days M was reluctant to let me out of his sight for long, especially when he was struggling to cope with the effects of the bowel prep on his system.  He understood that I needed to go out and get something to eat so that I didn’t make myself ill, but I would bring the food back onto the ward to eat at his bedside.  He didn’t necessarily engage with me for most of that time, preferring to be plugged into the TV or playing his tablet or DS, but my presence was very much required.  I took a supply of magazines, books and various puzzle books with me as well as my laptop, so I was able to entertain myself whilst he was absorbed in what he was watching.

teaOnce he started going to school, I spent my time off the hospital ward as much as possible, taking walks in the local area and getting some fresh air or doing the more mundane chores of laundry or tidying up our very small bed area.  I was lucky enough to be able to arrange to meet up with several of the lovely FABED Mums whilst we were there too as their children came in for various appointments or procedures.  It was great to actually meet, sit down and chat with some of these folks who’ve been giving support over the last 4 years and to finally put faces to names.

Did you have opportunities to have ‘a break’?

My only breaks were relatively short ones when M was in school or the evening he went to Scouts.  Some parents lived close enough to be able to go home or even into work during the day, but being over 2 hours away from London made that impossible for me.  The 2 Saturdays when Mike visited, he spent most of his time with M, so G and I could go out and have some quality time together.  We went to a coffee shop for elevenses both weeks, I took her out for lunch the first week and the 3 of us went out for dinner both evenings before they headed home.  We were lucky that there are restaurants nearby that do gluten- and dairy-free food options, so eating out with G proved to be easy to do.  But that was it.  No other breaks for me as it was, all things considered, a relatively short admission and I needed to be advocating M’s needs during our time there, something I just couldn’t take a break from.

How do you stay sane while there?

friendsWho said I did?!  Truthfully, my sanity remained as much in tact as it did thanks to amazing support from family and friends.  The folks who dropped me an email, sent me a text, popped something in the post for M or even arranged for a beautiful bouquet of flowers to turn up completely unexpectedly.  And that’s not even thinking about the wonderful Mums I met on ward, who were all there for varying lengths of stay, for vastly different reasons and who gave me an ear to bend and a shoulder to cry on when I needed them the most.  Believe it or not, we had a lot of fun in the evenings, sitting in the bay, comparing stories, sharing opinions of nurses and consultants, chatting about life and generally putting the world to rights.  Those friendships were made in the hardest of times and the strangest of situations, but are worth more than their weight in gold.  I met amazing parents who are facing much bigger challenges than we have to cope with and yet go about everyday with a smile and a kind word for everyone they meet.  We all had our down days when we needed the support of those around us and I can’t think of a nicer bunch of people to have been through that experience with (Rhys, Lauren, Caroline – you know who you are and thank you!)

Fabulous FABED!

FABED

We have once again enjoyed a busy weekend.  Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.

Legoland

What made this weekend so special was that it was organised with our EGID children in mind.  A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend.  An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent.  A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.

We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree.  This was our first FABED event, but were instantly made to feel welcome and amongst friends.  We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.

hotel

Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel.  There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes.  The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy.  We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.

 DSCF1549

The evening showed just how much hard work and thought had gone into making this an unparalleled get-together.  A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets.  Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food.  M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.

As soon as we heard about this day out, we knew we’d be going along.  It would have taken something extreme to keep us away.  M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down.  He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M.  They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.

I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice.  We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting.  We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.

We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room.  The lego models and details in these rooms are astounding:

SAM_1186 SAM_1185

This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness.  To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.