The Mystery of the Missing Bed

It sounds like one of the Enid Blyton stories that my children have been listening to at bedtime recently.  M and G have been loving the adventures of Fatty, Buster and the rest of the Five Find-outers gang, but this was a mystery set to challenge even the hardiest of intrepid adventurers.

Having received our summons to GOSH less than 24 hours earlier, and laden down with suitcase, backpacks, Lego advent calendar and the ever-present Cat, M and I found our way across London, through those infamous front doors and up to the long-term gastro ward.  We approached the nurses station and were greeted by a bemused looking senior staff nurse, who seemed uncertain as to who we were and why we were there.  I gave her M’s name and that’s when a look of complete panic swept across her face.  His name wasn’t on her master list, she hadn’t been expecting him and at that precise moment of time, there was no empty bed ready and waiting for him.

With profuse apologies and a promise to get hold of the ward administrator, the nurse in charge and the bed manager, M and I were left, with our bags, in the somewhat small and cramped playroom, whilst the mystery of M’s missing bed was investigated.  After the early start to our day and an emotional goodbye to G, I barely held it together as I called Mike with a slight hysterical edge to my voice. The play co-ordinator found a circuit board kit to entertain M and I got chatting to another patient and her Mum, who had just been turfed out their room and were waiting to hear where they were being moved to.  We all sat there for nearly 2 hours, whilst those in charge negotiated, discussed and settled the bed situation for all involved.

Courtesy of en.wikipedia.org

Courtesy of en.wikipedia.org

I might never know why the mystery of the missing bed happened or how it was resolved to everybody’s satisfaction, but I’m delighted that, thanks to the hard work of the nurses and the obviously determined look on my face that meant I wasn’t going to take no for an answer, M’s bed miraculously appeared in the “bay” and we could finally get ourselves settled in for the duration.

In Mummy’s arms

Courtesy of susanstark.net

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.

eggWe 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

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,

Stir-up Sunday

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Did you know that the last Sunday before Advent is known as “Stir-up Sunday”?  That it’s thought that this tradition was introduced to Victorian Britain by Prince Albert?  Did you realise that the Common Book of Prayer is the source for the nickname as the Collect for the Day starts “Stir up, we beseech thee, O Lord“?  And I love the idea that hearing those words whilst in church on that Sunday, meant that cooks, wives and servants would be reminded that it was time to get started on preparing the Christmas pudding.

20141123_151640[1]The reason I know all this is that this year Stir-up Sunday fell on November 23rd and I went on-line to track down its origins, whilst G and M helped my Mum create a culinary masterpiece worthy of a M-friendly Christmas.  My Mum was given this recipe a couple of years ago and it proved relatively easy to convert to suit our allergy requirements.  The children have enjoyed making it and this year was no exception, even though we know there’s a good chance that M won’t be able to eat it by the time Christmas arrives.  The recipe was also a great opportunity for M to practice his reading skills and he did a sterling job in making sure that all the ingredients were present and correct.

20141123_154214[1]With all the ingredients in the bowl, the whole family took their turn to stir the mixture and make a wish.  M took a little convincing not to share his wish with the world, but the pudding was made and is now waiting for Christmas day.  I’m assured by those in the family who enjoy Christmas pudding, of which I am most definitely not one, that this is a great recipe and that the pudding is delicious as well as being allergy-friendly.  Definitely one for the cook-book!

Waiting

Patience is a virtue, or so the saying goes.   I’d always thought of myself as a relatively patient person, but maybe not.  And definitely not when it comes to waiting for a hospital bed to become available and for testing and treatment to start.  Another week of waiting is over and a new one is about to begin.

 

#awatchedphoneneverrings

#awatchedphoneneverrings

Children in Need

Courtesy of www.bbc.com

Courtesy of http://www.bbc.com

If you live in the UK, I doubt you could have missed the fact that it was recently BBC’s Children in Need.  For those of you who reside elsewhere in the world and are wondering what on earth I’m talking about, Children in Need raises money for numerous charities, large and small, who work to bring much needed help to children across the UK.  The evening is celebrated with a TV extravaganza, which sees celebrities singing, dancing and otherwise performing as you’ve never seen them do before, all in the name of fundraising. Children in Need has been running for over 30 years and since 1980 has raised well over £600 million for the children it supports.

This year it set the theme of “Be a Hero” and G and M, as well as thousands of other school children across the UK, were invited to come to school dressed as a hero.  The options were endless and as we walked to school that morning, we passed Superman, Spiderman, Tinkerbell, Violet Incredible, Harry Potter and Florence Nightingale to name but a few.  I’m always interested to see who my two will choose to dress up as, not least because M’s costume almost always inevitably involves some late night sewing and creating by me.

20141114_082807G, after a short discussion with Mike about what her options were, settled on dressing as Princess Leia from the Star Wars trilogy, a choice that fortunately didn’t need much more than a few minor adjustments to the base layers we had.  A long-sleeved white long tunic, a pair of white leggings, her brown boots and a chain-style belt accompanied by the iconic hair-style of 2 coiled bun over her ears and she was dressed and ready for anything the galaxy threw at her.  She was delighted with her costume and I was impressed that it came home almost as white as when she went to school in the morning!

 

20141114_082832With G’s decision made, I waited nervously for M’s choice of hero, fully expecting him to have chosen someone far more complex, which would leave me scrabbling around for clothes to meet his exacting requirements.  So you can imagine my surprised delight when he went for what is possibly the simplest, but most meaningful choice he’s made in years.  M wanted to honour his very own hero, his gastro consultant at GOSH, Dr H, who has made such a big difference to his life over the last 3 years.  We put him into a pair of home-made scrubs and Mike generously donated a white shirt, which I adapted to be his doctor’s white coat.  A printed name badge declaring him as a “Consultant Paediatric Gastroenterologist” from GOSH finished the look.

Once school was done for the day, we raced home and changed into their onesies, ready for an evening at Stagecoach, before spending the evening at my Mum’s for dinner and the best of BBC light entertainment.  The night raised over an amazing £32 million with more money still to come in and be added to the total.  This will make a big difference to the children it can help support and it’s never too late to donate – just click on this link.

Pudsey

 

 

 

 

 

 

 

 

Beating the Bullies – Anti-bullying Week 2014

November’s proving to be a busy month, what with Armistice Day (11th), Children in Need (14th), World Prematurity Day (17th) and this week it’s the turn of Anti-bullying week (17th-21st).  The aim of the week is to raise awareness of bullying and encourages children, young people, schools, parents and carers to come together and work towards stopping bullying for all.  There are no official statistics about the prevalence of bullying across the UK, but recent reports state that almost 45,000 children spoke to ChildLine about bullying during 2013, a worryingly high number and one that’s unlikely to scratch the surface of the problem.

Bullying is defined as Repeated incidents of physical or mental abuse (teasing, taunting, name calling, threatening, isolating) of a weaker person by a stronger person.”  Stronger is not necessarily defined by size, but also includes those who are more confident or more able to pinpoint a weakness in the person they are victimising. The sad reality is that this naturally makes disabled children or those with special educational needs a prime target for bullies and they are more likely to experience bullying in school and in the wider community that other groups.  The focus of this year’s campaign is to eradicate bullying for these vulnerable individuals in particular.

This focus has struck a particular chord with me this week as M has been dealing with some bullying over the last few weeks at school.  Some of the boys in his class have been teasing him about his allergies by saying that they are allergic to him and then pretending to be physically sick. This has had a knock-on impact in the playground, where the same children have then been avoiding playing with him, leaving him feeling isolated and on his own.  He has some good friends, who have stuck by his side and defended him when he’s felt unable to do it himself; and his big sister has lent her support too by watching out for him whenever she can and inviting him, and his friends, to join in games that she’s playing with hers.

Unfortunately, M’s complicated needs – dyspraxia, dyslexia, EGID and food allergies – make him an obvious candidate for attention from bullies, who only need the smallest difference to focus in on and attack. We’ve taught him to stand up for himself without being aggressive or rude, to ignore whenever possible the comments made and to walk away when the going gets tough; but it’s not an easy issue to tackle.  Right now, he’s anxious about their response when he finally has his tube fitted and is even worrying about how things will go next year, once G has moved on to secondary school.  Don’t get me wrong, his teacher and the school have been proactive in dealing with the bullies, but they can’t take away his fears or his belief that he’s not being heard.

Sadly he’s not on his own.  Children with complex medical needs can feel isolated by their illness as they struggle with feeling different and the questions of why they can’t be like their friends or why they are so frequently absent from school.  Even those with better known conditions, such as T1D or asthma, may have limited contact with others of the same age who are dealing with the same issues and I can only imagine how much harder it is for those with rare illnesses, who may know no-one else with the same diagnosis in their area.  A lack of true understanding about their medical needs and the impact on their everyday life can add to their frustration and the sense of being on their own.  Adding bullying to that already tumultuous mix is often a burden too many and these children may head into a downwards spiral that can result in poor self-confidence, depression and even self-harm.

What can we do?  I don’t have an easy answer to that difficult question.  As a parent I can educate my children to respect the differences of their peers and not to belittle those who don’t conform to society’s notion of “normal”.  I can encourage them to enjoy friendships with everyone and not just those who have similar interests or hobbies.  I can teach them that sometimes they won’t see eye to eye with their classmates and that those differences of opinion is what will challenge and shape their own beliefs.

And as a parent to children who stand out from the crowd, I can help them find their feet in our world, to stand strong when challenged and to see the value in their very uniqueness.

World Prematurity Day 2014

premdayHow time flies.  A year ago I discovered – a day late – that November 17th marks World Prematurity Day; this year I’ve contributed to an event that will help bring awareness to this occasion.  During the year I have joined a FB group that is dedicated to those babies who spent time in our local NICU and the stories of their survival against all odds are amazing to read.  This morning, the support network run there for NICU parents, held a coffee morning for those currently living on the unit, which was accompanied by a board displaying photos of past NICU graduates, including G and M.  The request was for “Then and Now” photos to share on the corridors of the unit to celebrate how far they have come and to give hope to those starting their journey.

20131118_191352

The statistics are staggering.  Around 15 million babies will be born prematurely around the world this year, 60,000 of those in the UK.  In your average classroom of 30, there are likely to be 3 young people who arrived earlier than expected, some of whom will have slipped into a different year group and are now amongst the youngest in their year, rather than one of the oldest.  In one way or another, these youngsters will have challenged the doctors and nursing staff who dedicate their lives to caring for preemies, continued to strive to grow and succeed and will go on to do much bigger and better things than was ever imagined at the start.

Mike and I will be forever grateful for the amazing care that was given to both G and M during their time on NICU and feel privileged to have met such wonderful, caring medical staff whilst we were there.

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They’ve come so far since their NICU days