Tag Archives: family

“Muuummm, what’s for tea tonight?”

Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing. In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few. Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

“Magic never dies. It merely fades away.”

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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:

AT LAST, SIR TERRY, WE MUST WALK TOGETHER.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

The End.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

I first discovered the Discworld and its diverse cast of characters in the late 1980s and quickly found myself reading, and re-reading, his books as I waited, often impatiently, for the next one to be published. My Dad and I shared a love for the Discworld and my Mum often commented that she knew when either of us was reading one of Pratchett’s books as they caused us both to laugh out loud, something no other author had ever done. Our joint appreciation for Pratchett’s fantasy world is one of my fondest memories and even now, I find myself transported back 20 years, to times spent sharing our newest discoveries in his latest novel whenever I revisit these tales these days.

It’s difficult to explain what made Terry Pratchett’s books just so un-put-downable to me. His clever play on words frequently made me laugh out loud – who can forget Twoflowers’ explanation of an “Inn-sewer-ants-polly-sea” in “The Colour of Magic“? His unashamed use of characters or plots from other authors was delightfully skilled – and the 3 Witches in Shakespeare’s Macbeth were not a patch on Granny Weatherwax, Nanny Ogg and naive Magrat Garlick in “Wyrd Sisters“. His sense of humour was evident in almost every word he wrote. I loved nothing more than waiting to see the plot twists and turns that each new storyline would take and spotting the sometimes obvious, sometimes more oblique references to popular culture. And in every step of my adult life; be it at university, in the work-place, waiting at the school gates or in our EGID world, he has oft become the common bond that starts a friendship or fills a gap in the conversation.

In the days following his death, Terry Pratchett’s fans have given him tribute by taking ideas from his books to create a fitting memorial. The first was a petition asking Death to “Reinstate Terry Pratchett” because Terry himself said that “There are times in life when people must know when not to let go. Balloons are designed to teach small children this” and already nearly 30,000 people have added their names to this request.

The second took an idea from his 33rd Discworld novel, “Going Postal”, which saw the advent of a communication system, somewhat comparable to the internet. When a key character dies, a message bearing his name is sent down the lines on an unending journey to ensure that it is kept alive indefinitely because “A man is not dead while his name is still spoken.” Keen Pratchett fans have developed code that is being embedded on websites to ensure that his name is similarly forever encoded on the internet.

In the past few days, I have started to revisit his books, many of which reside on my book-shelves, and have found myself to be once again amongst old, familiar friends. The humour never fades and with each reading, I discover a small nuance that I hadn’t noticed before. Rincewind, Granny Weatherwax, Captain Vimes and the Discworld have been a part of my life for nearly 30 years and I look forward to introducing both G and M to these adventures in the not-too-distant future.

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

– Reaper Man

Photographic evidence

E028 – the success story

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Courtesy of http://www.pmmajik.com

When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”. We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life. And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet. It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

Courtesy of nameonline.net

Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally. We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too. We have laughed, cried and got angry together. We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life. Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married. We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world. Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story. Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped. Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back. M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself. His joie de vivre has returned and his humorous outlook on life is much more evident. As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year. It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction. We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction. We need to work on getting food back into M’s diet without upsetting this balance that he has found right now. There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us. Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.

Pump action

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Having sussed making the elemental feeds, and NGT management having quickly become second nature, our final challenge was to learn all about the small piece of equipment that is going to become a key member of our household for the next few months – the pump. M has the Flocare Infinity pump from Nutricia, which has proved to be easy to handle and quick to program. I was trained in just 40 minutes whilst M was still admitted at GOSH and even though it all felt rushed, it was actually all I needed and I was just about confident enough to go home with him 2 days later. Our excellent Nutricia nurse, from their local community nursing team, came out to train Mike the day after M was discharged and she has also held a training session at school to ensure key members of staff are up to speed with what they need to do during the school day.

The set-up is easy. The first thing we have to do is set the volume of the feed – either 1000mls or 500mls for M – and the rate in ml/h, which we set to 150 ml/h. The pump retains the information from the previous feed, so it is important to check that these 2 figures have been set correctly for the feed you’re giving. I then press the “info” button, which tells me the exact dosage that was given to M in his previous feed and clear this number from the pump’s memory. This records how much of the required volume has been given since the pump was started, so if you don’t take care to delete the previous information, you could find yourself giving a lot less than the required amount.

Courtesy of http://www.nutriciaflocare.com

The pump is then attached to the feed bottle via a feeding kit, which is a length of tube that joins the bottle to the NGT via the pump itself. We were provided with a small plastic stand, which holds the pump at the bottom with the bottle hanging upside down above it, firmly strapped in place. The feeding kit is attached to the top of the bottle, threaded around the pump stand, carefully avoiding getting it trapped between pump and stand, and then looped around the mechanism inside the pump. Before connecting the loose length of the feeding kit to the NGT. you need to fill the entire length of the feeding kit tube with the feed to make sure you’re not pumping air into your child. We were shown to do this using the “fill set” button, which runs at the fastest rate possible and takes seconds to fill up. Once this is done, it’s simply a case of attaching NGT to feeding kit tube and pressing start. All being well, the feed is now underway and, in an ideal world, you can leave the pump alone until the feed is finished.

However, reality is very different and you will quickly become attuned to the beeping of the pump alarm. It can and will beep for any number of reasons: there’s air in the tube, the tube has become kinked or blocked on the way into the pump mechanism, the tube between the pump and your child’s NGT has been kinked/blocked/sat on/folded tightly between your child’s fingers such that the formula has no place to go or sometimes, just because. Sometimes the alarm is easy to resolve, simply a case of stopping the pump, removing the air/blockage/kink and restarting; but sometimes no amount of jiggling wires, shaking formula bottles or removing everything from the bag and the stand will stop that alarm sounding every 5 minutes or less. We’ve even tried that old IT support favourite of switching it off and then on again and have had limited success in silencing the beeping for more than 5 minutes. Both G and M know how to switch the alarm off, but both are guilty of occasionally forgetting to make note of what fault featured on the digital display, leaving it to my superior Mummy detective skills to work out exactly what might have caused the problem that time round. Nevertheless, the odd mad beeping episode aside, the pump generally does what it should and copes in an admirable fashion with being bounced around on M’s back for 10 hours a day.

Courtesy of minionlovers.weebly.com

So this little purple pump has become our new best friend. Just like a favourite fashion accessory, we rarely leave the house without it or the trusty back-pack. M can do almost everything whilst wearing it and has become adept in the art of adapting to its very presence in his everyday routine. And whilst it is ever-present, we’ve learnt to have a laugh and have attributed it with its very own personality. Some of the lovely FABED family shared that naming the pump helped make the whole experience easier and more fun for their child and one Mum even said that the pump reminded them of a minion. This latter idea made all of us smile because we knew instantly what she was referring to: the incessant beeping of the alarm which is hard to distinguish from the “Bee-do bee-do” heard from the Fireman minion who helps put out Gru’s office fire. Of course, even though M’s pump bears more resemblance to one of the evil purple minions from Despicable Me 2, bent on a path of destruction, it’s hard work and support in providing M with the means to have the nutrition he needs is far more comparable to their loveable yellow counterparts.

Disclaimer: I am not a medical expert and this blog does not constitute medical advice. I have detailed how we have been taught to run M’s pump by the professionals involved in his care. Please note that any questions concerning a feeding pump and the associated kit should always be directed to your medical team.

A day in the life of my tube-fed child

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Ever wondered how having a tube impacts on everyday life? Here’s a little insight into a typical day in the life of my tube-fed child:

6am – 8am – Whilst we try to leave M sleeping as late as possible, our day starts much earlier. Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed. Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night. Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.

8am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in. M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once. However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.

8.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time. Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone! Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.

9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one. Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times. We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time. He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off. This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through. The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day. Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.

Courtesy of telegraph.co.uk

3.30pm – End of school and on to the next part of our day. On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.

4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far. We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV. As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead. I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time. I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.

Courtesy of shutterstock.com

I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge. In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time. Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children. If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!

Midnight music practice is the way to go!

5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night. Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there. Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!). We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm. M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music. He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed. On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.

A Super Tubie of my Own

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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”.

M’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

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_181917 So, 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.

Christmas without food

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It’s not until you find yourself in a situation where you need to avoid food that you realise just how much of our everyday lives and how many social occasions revolve around meals or other food-based activities. Just think about it: birthdays are celebrated with a mix of party food, cake, treats for your friends and – when you’re turning 9 – party bags filled with sweets; Easter inevitably includes the requisite chocolate egg plus Easter biscuits and Simnel cake; a catch-up with old friends often starts with coffee and cake and may well move on to drinks and dinner; and Christmas is, quite simply, the time when we all over-indulge and go mad, filling our cupboards and fridge with chocolates, biscuits, mince pies and brandy butter in a manner that suggests there’s a genuine risk that we might run out at any minute.

Our plans for this Christmas itself were relatively simple. My Mum had suggested that we served a buffet over the festive period, rather than having the traditional mid-afternoon sit-down feast that we’ve all become accustomed to, which seemed a great alternative and allowed us to cater for everyone’s needs. Much to my surprise, M was keen for the rest of us to sit at the table for supper on Christmas Eve, whilst he sat in the other room watching some Christmas TV and sipped his glass of full-sugar 7-up, one of the few treats he’s allowed alongside his elemental feed. By Christmas Day, he wanted to have company in front of the TV and Boxing Day saw us eating in shifts, whilst the others played board games or watched films with M. We quickly learned to let M decide where he was happiest being at meal-times and included him in as many traditions as we could – pulling Christmas crackers, sharing the jokes, wearing paper crowns and making the time as normal as possible without focussing all our attention, and his, on the food.

Courtesy of abcnews.go.com

We thought we had covered all the bases this Christmas, or at least, all those we considered to be the biggies, but it was the little things that crept up and caught us unawares. Our Christmas stockings always include chocolate treats (dairy- and soya-free naturally), a box of tic-tacs, a handful of nuts and a satsuma pushed down to the toe, but none of those could find its way into M’s stocking this year. I had bought Moo-free chocolate advent calendars and selection boxes for both children before we knew he’d be going into hospital and whilst M had managed to have 4 advent chocolates before his admission and G enjoyed the rest whilst he was in, I had to work out how to give G the selection boxes without rocking M’s world too much. This was one of those small things that needed a lot of late night planning on Christmas Eve.

In stark contrast, Mike and I had considered beforehand the treats that usually adorn the coffee table at home and deliberately didn’t leave out the boxes of Turkish delight or the dates or the orange and lemon slices in their normal home. Instead, we stored them in a safe corner to be pulled out once both children were in bed as we didn’t want them to be a constant reminder of what M couldn’t eat and yet he objected more to us hiding these goodies away than leaving them on display. “It just isn’t Christmas, Mummy” was his feeling on the matter, without these seasonal delights out for all to share and enjoy.

~~I’m not sure~~ I know that we didn’t get everything 100% right, but given that we were very much thrown in the deep end with little advice on how to survive the day, I think we did okay. The biggest lesson learnt was to be flexible on a daily basis and not to expect one day to be like the next, both at home and at school. Some days M sits and chats with G at the dinner table, enjoying a Foxes glacier mint (another small treat allowed) and a glass of 7-up whilst she eats her meal and yet the next will find him close to tears and hidden away in another room for the duration. There is no pressure for him to constantly be a part of every meal-time and as long as he spends some quality time with the rest of the family, I’m happy to give him the time-out he sometimes so desperately needs.

Merry Christmas!

In Mummy’s arms

5 Replies

Courtesy of susanstark.net

I lay awake in the early hours of this morning, watching my beautiful babies peacefully slumbering alongside me in the bed. I know that this morning, more than any other morning in recent days, both children needed the comfort of being in Mummy’s arms and resting with me. After weeks of (im)patient waiting, yesterday afternoon the phone-call finally came and at the remarkably short notice that I had been anticipating. I had less than 24 hours to book train tickets, pack a case, prepare crib notes for Mike and contact everyone who has anything to do with M to let them know about his hospital stay over the next 3 weeks, as well as the everyday tasks of cooking dinner, making packed lunches and sorting school clothes for the next day.

Whilst I whirled around the house in a haze of slightly panicked chaos, the children spent their last evening together for a while in typical fashion – hurtling from cuddling up to each other to threatening to scratch the other’s eyes out in a matter of minutes. M was particularly hyper and could barely sit still in his seat. Instead, he bounced, jigged and ran around the house like a mad thing, the clearest sign that his stress levels were high and gradually rising even higher.

We had a “last supper”, together as a family. One chosen by M. His consultant had suggested that he could relax his diet just a little before coming off food altogether and so Mike and I had expected him to choose something like fish and chips or Chinese. Instead, he requested the item that had been at the top of his Christmas list this year – an egg. So, the four of us enjoyed a poached egg on toast as well as a “dippy” egg with toast soldiers. It was a simple meal, but one that he heartily enjoyed and devoured with gusto.

Finally bathed and in their pyjamas, Mike read them a bedtime story, whilst I ran through my mental checklist and gathered up the last few bits to accompany us to London. G settled to sleep as quickly as ever, whilst M was awake until 11pm. He finally slept, snuggled into my side, with my hand tightly gripped in his much smaller one. Mike carried him back to his own bed and then we tried to sleep ourselves, knowing that, for me in particular, sleep would be a precious commodity over the next 3 weeks on a hospital ward.

I’m not to sure what time G crept in to our room, but I was suddenly aware of her presence on my side of the bed and she was quick to climb in for a cuddle as soon as I invited her in. My big girl doesn’t need my comfort so much these days, especially at night, but tonight she needed to feel Mummy near and I loved having that opportunity for an extended cuddle. Less than an hour later, just as I was drifting back to sleep, I heard the sound of footsteps running across the landing and in climbed M, snuggling down in his preferred position between Mike and me.

Courtesy of paediatricsconsultant360.com

Our bed isn’t really big enough to fit 4 these days, but tonight, of all nights, I relished the quiet opportunity to have our whole family together, in peaceful harmony; something that won’t happen again until M and I return from our adventures at GOSH,

7 years to diagnosis

Searching for an answer

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In Mummy’s arms