Category Archives: Family

Hitting 12

It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx


Daddy’s new toy

Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.

Old-fashioned manners

My kids aren’t perfect – believe me I know – and all too often there are those moments when I wish they’d remember the manners we’ve strived to instill in them over the years. They’re not always brilliant at doing the littlest of things that would make a big difference and I know that’s something that can frustrate my Mum (Hint: it does frustrate her and she might have mentioned it just once or twice to me in the last couple of weeks) Both G and M are a quirky mix of grown-up attitudes – due to their life experiences with chronic health problems – and a lack of rational thought because they’re both still very much children at heart. They’re tentatively challenging the boundaries set them by family members in particular; and sometimes not so tentatively at all; whilst very much toeing the line outside of the home, which inevitably leads to tears and meltdowns, and not necessarily just from them. Insecurity, uncertainty and lack of self-confidence is overcome with bold talk and bravado, which can be misinterpreted as arrogance and rudeness, when the truth is that the child beneath it all is struggling with anxiety and striving to find a different face to present to the outside world.

However, the one thing that I insist happens every year without fail is something that almost certainly falls into the category of “old-fashioned” manners in this day and age. Just a few days into the New Year, I shared this photo of G and M sitting at our kitchen table working hard to write the thank you notes for the Christmas presents and, in G’s case, birthday presents, they had recently received. It may not be their favourite task in the world and it may take a little persuasion to get them started, but they both know that this is a non-negotiable part of the celebrations for both Christmas and birthdays and always buckle down to write them, often treating the job as a competition to see who can finish writing all their notes first. These are no great literary pieces, just a simple acknowledgement of those family members and friends who have remembered them at this time of year and taken the time to buy and send presents that are always gratefully received.

M views me as being a particularly evil Mum because I won’t let him type out his letters, but rather insist that we take advantage of the opportunity to draw faint pencil lines and practise his best handwriting. Why? Well, I suppose I just think there’s something a little more personal and thoughtful about receiving a handwritten note of thanks, though frankly I would be happy to receive even an email rather than absolutely nothing at all. No acknowledgement leaves me wondering if the gift has arrived at its final destination and I have been known to threaten to not send presents again when weeks have passed by and I’m still uncertain whether they’ve been received or not. Does this make me old-fashioned? Maybe, but good manners don’t cost anything and it’s important to me that my children develop an attitude of thankfulness for all that they are lucky to have.


Taking Over once again

In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.


So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!


A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.


There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.


Reaching our majority

Another year on and we’ve finally reached our majority! 18 years of marriage, which according to this website, requires a trip to either China or Denmark. We enjoyed our nod to the first when we ate dinner in Chinatown, London on Saturday evening, but today will just be about a meal at home once the children are in bed, a glass of something cold and probably not too much else!

Happy Anniversary Mike – love you always


14 already?!

I really don’t know how we got to this day as it doesn’t seem like a year since we celebrated her becoming a teenager and certainly not 14 years since we welcomed her into our lives. 14 years filled with love and laughter, tears and tantrums, moments of great pride and times when we’ve wondered if we were getting the whole parenting thing even vaguely right. Today we have a beautiful, sensitive, generous and kind-hearted young lady as an invaluable part of our family, even if we could do without the slamming doors, stomping feet and looks of pure disdain that do radiate from her almost weekly without fail.

Happy 14th birthday Floss – you are our whole world. Love you always xxx



On the 5th Day of Christmas…

There’s nothing I love more than decorating the house for Christmas, although the last 3 years have each carried their own challenge to being able to achieve that, with admissions to GOSH 2 years in a row followed by a health scare with my eyes last year. This year we’ve all been at home, all been in reasonable health and have all had a part, however small, in bringing the Christmas spirit into our home. Sunday was the day to “deck the halls” at home and M in particular couldn’t wait to get started on trimming the tree. With Christmas carols playing in the background, mulled wine warming on the stove and the advent candle burning down on the mantlepiece, the Christmas season really has begun.

I always feel particularly nostalgic when it comes to pulling the decorations out for our Christmas tree as each bauble evokes its own precious memory. Every year we buy at least one new decoration for each child for the tree and frequently they end up with more than one depending on our travels and on friends and family members who also buy and add to our collection. By the time G and M are ready to fly the nest and have their own homes to spend the festive season in, they will each have a boxful of decorations to trim their Christmas trees. As we unwrap each ornament, the memories of time spent together and journeys made wash over me and there are often stories to share as we reminisce about times past.

It’s hard to pinpoint my favourite decoration as there are so many happy memories encaptured in the beauty of our tree. There’s the small gold bauble with a red ribbon that marks our wedding as I hand-wrote enough for every guest to have one as an alternative wedding favour to celebrate the day. I have 2 handmade snowflakes from a German Christmas market, which my Dad brought back from a business trip and that have a special place in my heart. There are many from our holidays both before and after G and M arrived in our family – China, Australia, Ireland, Canada and even Greece to name but a few. Amongst the most precious are those the children have made over the years, from simple paper and sparkles in their nursery days to the hand-decorated ceramic ones that M made during his last hospital admission.

Today is the 5th day of Christmas and I’m looking forward to the memories we’ll be creating this year as we count down to the big day itself.


All Different, All Equal

This week is Anti-bullying week and this year the campaign has adopted the tagline “All different, All equal” to promote difference and equality in schools. As the Anti-bullying Alliance’s website states, the idea behind this is to “…help children and young people celebrate what makes them, and others, unique and help them understand why it’s important that every child feels included in school able to be themselves without fear of bullying...” This has struck a particularly resonant chord with me as feeling different to classmates is something that not only do I recall from my own school days, but something I am aware both G and M have felt over the years.

For me, and let me be brutally honest right now, I hated every moment of living with T1D as a teen. Not only was I having to deal with the challenges of impending adulthood and puberty like all of my peers, but my T1D added another layer to the emotional mix that I really didn’t want to have to face. At school I felt like the odd man out. I didn’t really know anyone else my age with T1D and I was the first diabetic in my school. I suffered extreme teenage angst about not being able to buy sweets and chocolate from the break-time tuck shop and that seemingly small thing became a massive problem that I struggled to overcome. My friends accepted my differences far more readily than I did and yet I felt alienated from them. My own anxieties and poor self-image became mountains I just couldn’t scale, particularly when some of the other girls in my school year began to exclude me from friendships that had been there since I was little and threw cruel words in my direction which hit incredibly deep.  Whether they had truly identified my lack of self-esteem as an easy target for their unkind comments and actions or not, I can still recall just how devastating that time in my life was for me. I’m sure that I was not on my own with those feelings, but I felt isolated in a world that seemed to be quite happy without me.

Sadly, G struggled similarly during her Infant school years when so-called friends who had helped ease her move to a new school, discovered that her health issues could be used as a taunt against her and caused her unbelievable emotional pain. Thanks to a fantastic and supportive Year 2 teacher, G was encouraged to tackle the bullies and their behaviour head-on and she learned to stand up for herself, something I didn’t learn until I was much, much older. I know that her gluten- and dairy-free diet still makes her feel too different to the rest of her tutor group for comfort and she has struggled with sticking to the restrictions, especially when her friends are enjoying treats that she would love to be able to eat. We’ve worked to fill her lunchbox with foods and snacks that make her feel a little more “normal” and a part of the crowd, and I will continue to hope that this doesn’t become a cause for bullying as she moves her way through secondary school.

Likewise, M’s complex medical needs have left him being subjected to cruel words and unkind actions in the past, something that is not unusual in the world of chronic illness. Whether it is an obvious physical difference, or something more hidden like T1D or allergies, the sad truth is that children can, and will, be cruel. All children are fighting to find their place in the world and will look to find their footing without regard for those surrounding them and especially not for their feelings. As parents we need to teach our children about the beauty in diversity and encourage them to be kind in their thoughts and deeds. My children are wonderfully unique as are their friends and that is something to embrace wholeheartedly and without reservation. This year I will be making sure that they understand the truth in these words: All different, all equal.


The Newest Addition

Back at the start of this year, Mike and I managed to escape the UK and headed to New York for the week to celebrate my 40th birthday. It was a fantastic trip where we had so many fabulous experiences and yet a single event managed to interrupt our time away from home and left us having to consider how to break some very sad news to our youngest once we were back.

M’s beloved cat, Ginger, who had proved to be an invaluable part of our family as he brought so much comfort to M at some of the most difficult times of his treatment over the years, was hit and killed by a car on the main road near our house. My Mum, who was looking after G and M whilst we were away, somehow managed to keep this news from them both, even though they were checking in at home every couple of days to feed the cats and M’s dragon, Leo. I knew that this would be hard news for M to hear and feared a similar reaction to when we discovered one of our twin black cats had suffered the same fate 6 years ago when M was just 5. Back then, M had spent the entire evening and much of the night in tears and refused to eat for nearly 24 hours, an experience I hoped we’d be able to avoid.

Both children were upset when we finally broke the news, and although G’s response was fleeting, M struggled almost as much as we had expected. Much to my relief, the effects of this loss were not so long-lasting and within days M had moved on to what was obviously to be the final part of him coming to terms with the situation: the request for a new kitten. Knowing our son as well as we do, this didn’t come as any surprise to either Mike or me and we had already agreed on our answer. We would consider getting him a new kitten, but it would need to wait until we had got through SATs, past our summer holiday in Greece and were settled into the new school year.

Much to our delight, M could see the sense in this suggestion (something that doesn’t often happen) and happily agreed to delaying our search until the end of the summer at the earliest. Over the following weeks and months, G and M discussed at length what they were hoping for in a replacement pet. It had to be a kitten (because they’re cute), it had to be ginger (because Ginger was) and it had to be a boy (because…well…just because). Almost as soon as we arrived home from Greece, the search began and I spent the next couple of weeks online to find out what kittens were available in one of the many cat rescue centres in the area. To our delight, my enquiry about a different set of kittens led us to the discovery of the delightfully named “Bill and Ben”, a pair of ginger toms who were both looking for a new home.

Despite the best entreaties of G, who fell in love with “Ben” when we met them for the first time, and the surprising expectation of both Mike and my Mum that I would come home with both kittens, I managed to stick to what we had originally agreed and so it was that “Bill” joined our family at just 10 weeks old. He has been a source of great joy and many giggles since he first joined us at home, though his current tendency to bite everything in sight, particularly ankles and feet, has led to some frustrated shouts of pain too.

Now at nearly 4 months old, I take great pleasure in introducing you to the newest addition to the 7Y2D household: Biggles!