Tag Archives: celebration

Last night of the Welsh Proms

There might still be a little time to wait until this year’s Last night of the Proms, but a couple of weekends ago, we were lucky to be able to make the road trip to Cardiff to celebrate the Last night of the Welsh Proms – and what a fantastic evening we enjoyed. Mike and I have been before with the Welsh side of my family, but this was the first time that G and M came too and it turned into a family affair with my Mum and Aunt both joining our gang. As you might expect from the great British tradition of the Proms, the night was filled with a selection of well-known classical pieces played by the Royal Philharmonic Orchestra ably led by the hugely talented Owain Arwel Hughes, who is South Wales born and bred.

One of the highlights of the evening was, without a doubt, the world premiere of Mealor’s Concerto for Euphonium, which demonstrated the incredible talents of musician David Childs and kept the audience spellbound throughout its duration. Both children enjoyed the first half, though M was more than a little restless throughout, not fully expecting to have to sit still and listen whilst the music played. G has been more enamoured since discovering that her great-great-grandfather played the euphonium in his local band.

The second half of the concert, however, was when their enthusiasm really came into its own, even considering the slight handicap of them only knowing a few words in Welsh. My Mum had spent the week teaching them one of the Welsh songs and both children had a good attempt to recall the words, no matter how fast the music was playing. Flags were waved, songs sung and the entire audience stood up and sat down as the whim of the conductor dictated. The concert finished with a rousing rendition of the Welsh national anthem, Hen Wlad Fy Nhadau (Land of my Fathers) sung only as the proud voices of the Welsh valleys could do so. It was a lovely evening with some fantastic music and I can’t wait to take the children along again.

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“This is my one small step, this is my walk on the moon”

I’m not quite sure how this happened. Two years ago marked the end of G’s Junior school career and now we find ourselves at the cusp of a new adventure for us all as M’s time at the Juniors similarly draws to an end. The past 4 years have been a true roller-coaster ride and the staff at our wonderful village school have been there for every step of the journey. From the moment we stepped through their doors, they have embraced the challenges of having M in the school and provided the whole family with the support we’ve needed to get the children through all those ups and downs relatively unscathed.

In some ways, the last 6 months have been the toughest of his school career, even more so than the NG-tube and broken leg we’ve dealt with in that time. He wasn’t able to attend his Year 6 camp because of poor health, but he found the joy in spending the day there getting muddy with his friends instead. We survived the stresses of SATS and celebrated in style last weekend when we found out just how well he did in passing them all. We’ve enjoyed the Year 6 production of The Wizard of Oz and are finally winding down to the Leavers’ Service at the end of the week.

This comment in his end of year report from his class teacher reflects the wonderful young man he is growing up to be:

He is an inspiration to his peers that in spite of his health issues, he participates fully in everything and does not use his illness as an excuse not to try….Thank you M, for being such a valuable member of the class this year. You contribute more than perhaps you realise!”

As we wave goodbye to the end of an incredible era, there will be more than one tear shed along the way, but we are preparing to embark on the next big adventure, building on the incredible foundation that has been put in place with great care, love and consideration over the last few years:

In the blink of an eye

Despite the numerous hospital visits over the last few weeks – think local hospital…GOSH…local eye hospital…Moorfields…local hospital….local eye hospital….local hospital – this December has been everything I’ve longed for it to be and so much more. For the first December night in a long time, it’s fast approaching midnight Friday and my evening of work is only just beginning. In the last couple of hours, I’ve knocked up a batch of img_12811M-friendly apple and pear cupcakes, a batch of G-friendly vanilla cupcakes and I’m currently struggling with the chocolate brownie sponges that are refusing to be moved from the cake tins. There’s 2 lots of icing to sort out, decorations to be finalised and they all need to be applied to the cakes themselves, but I’m delighted to find myself spending this winter evening like this.

Not only have we broken the December 3rd curse of an admission to hospital, but we’ve also beaten the steady stream of bad luck that has engulfed G’s birthdays for the last couple of years and are getting to spend the day itself at home with our most favourite young lady. Well, I say at home, but of course, the path of G’s birthday never did run quite that smooth, but it’s as close to being at home for the evening as we could wish. It’ll be a day of “work as usual” for us all and our evening plans are dominated by M’s school’s carol service, but we’re all together and that’s something that hasn’t been possible since 2013. All that being said, it does appear that we have created a new December tradition when it comes to G’s birthday and it’s a good thing img_12861that my sense of humour is very much in tact. It was with a wry smile that G and I summoned a black cab to take us to GOSH on Sunday from the train station, not for a visit to a hospital-bound younger brother, but  this time for the final YPF meeting of the year. I’m not sure that Christmas would be Christmas for me without the opportunity to wander the length of Oxford Street on the hunt for last-minute gifts and small stocking stuffers!

img_12881It feels even more special this year as my baby girl, my precious first-born, hits the start of her teen years and all the emotions that those have to bring. In the proverbial blink of an eye, my December 2003 baby is turning 13 and in front of me stands a beautiful young lady, with a little more attitude and grumpiness than I would have chosen, but with a kind heart, generous spirit and the most loyal friendship on offer that you could ask for. She is growing up fast and we are quickly losing sight of the easy-going, chatty toddler that she was as an opinionated, independence-seeking, moody teenager appears in her place. She can slam doors with the best of them and her stomping feet can make it feel as if the kitchen ceiling is about to come down at any moment – and indeed it pretty much has done. These days she brooks no nonsense from her little brother and yet she will defend him to the hilt when it comes to it and is there to comfort and hug even when he doesn’t want it. She’s looking to make sense of a world that often doesn’t and is trying to understand how to interpret the nuances when it would be so much easier if everything was clearer defined in black and white. She can be the much-needed splash of colour in a reality that is all too often dark and depressing and yet will quietly fade into the background when everything gets too intense and too much. She is an incredible blessing to all our lives and we are all so grateful to be celebrating a life that is so much better for the 13 years she’s been an integral part of it.

Happy 13th darling G, we love you so very, very much xxx

A Mini surprise for a Big birthday

At the beginning of October, I started my second new job since July after being made redundant just before the end of the summer term. This new position is a really exciting opportunity for me as I become Finance and Administration Manager for a local project and even though I never imagined myself being able to say this, I am now grateful for that redundancy as there is no way that I would have even considered applying for this post if I had still been working comfortably close to home. The biggest change has been the huge increase in my hours and I am fortunate that once again I have found an employer who has been understanding about our home situation with M and my current need to be able to work from home on a regular basis. Bearing all that in mind, you’ll understand why baking has dropped down to being a fairly low priority on my list and the presence of xxcakes or biscuits in our house has been practically non-existent. However, with Mike’s 40th birthday looming mid-month, I needed to find some time to attempt, yet again, a version of his all-time favourite dessert – Lemon Meringue Pie – that would not only keep him happy, but also allow G and M to enjoy it too.

Looking back at my blog posts from over the last few years, this isn’t the first time that I’ve tried to recreate this classic dessert, but every time something hasn’t quite gone according to plan, usually the egg-free, rice-based meringue for the topping. The discovery of both rice protein powder and rice vinegar on the on-line supermarket site, FreeFrom Market, suddenly made the prospect something more than a pipe-dream and the Friday before Mike’s birthday saw me desperately trying to whip up a batch of mini meringues, safe for all members of the family. I’ll be honest, the recipe still isn’t quite there and it’ll need some more tweaking to get my perfect meringue, but they tasted good albeit that they were a little stickier than I perhaps had in mind.

I had decided that trying to create one large pie really wasn’t going to be feasible when it came to either my few-ingredients short crust pastry or the meringue itself and so settled on baking mini pies that would be just enough for a rewarding mouthful. I converted a simple short crust pastry recipe to suit M’s allergy needs and, with a few adjustments along the way, managed to produce some fantastic pastry cases which, much to my surprise, baked beautifully and maintained their shape as they cooled. I had already decided to replace the lemon filling with generous spoonfuls of my M-friendly lemon curd and popped the filled tarts into the fridge to allow the curd to set before adding the final touches. As soon as the mini pies were chilled, set and ready to eat, I dropped img_12221a single mini meringue on to the top of each one before serving to my eager husband and child. I will add at this point that neither G or I partook in this particular delicacy – the sharpness of the lemon didn’t appeal to G and the sweetness of the meringue doesn’t agree with me and my T1D tastes. However, despite the fact that only 50% of the family chose to eat these birthday treats, they were extremely well-received and I am reliably informed by both the men in my life that the lemon zest in the pastry when combined with the sharp lemon and sweet meringue was a taste sensation they very much enjoyed.

My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

Another year over

And just like that, it’s another year over: 12 months of big medical decisions, longer-than-expected hospital admissions and a huge amount of growing up in the 7Y2D household. There’s still lots to share about our December, but that will have to wait for 2016’s posts to start, especially as I need to gather my thoughts and reflect with a clear head and heart about all that happened.

For now, let me simply wish you all a new year filled with peace, happiness and love

from my family to yours, Rxxx

To my darling daughter,

To my darling daughter on the eve of your 12th birthday:

This wasn’t quite what I had planned.

Today I was supposed to be baking up a storm in the kitchen, IMG_0063[1]making some special cupcakes to celebrate your 12th birthday tomorrow, cakes to make up for you having to celebrate your last birthday at GOSH with M and without a cake. The ingredients are bought and hiding at the back of the cupboard, so maybe I’ll have the chance to bake them for you for Christmas because instead I’m over 100 miles and 3 hours travel time away from you.

Today we were supposed to be enjoying time together as a family as well as with your beloved Godfather, Uncle A and his family; instead you and Daddy are at home with them all, whilst M and I while away our hours within the confines of GOSH on our own.

Tomorrow M and I had planned to serenade you awake with a rendition of “Happy Birthday” before watching you open your presents and cards and sharing the excitement of each new gift with you; 20151018_133210instead we’ll be watching via FaceTime to see what goodies you’ve received with our fingers crossed that our cards have arrived from London in time.

Tomorrow was going to be a busy day: first to watch you both in our church Nativity, then head off for a special birthday riding lesson before a late lunch at Wagamama to celebrate your big day; instead you’ll be doing those things with Daddy, Uncle A and the rest of the gang, whilst M and I share a quiet day and hope to be able to get to the Carols by Candlelight service at the church around the corner from GOSH.

However, it doesn’t really matter what was planned or what’s going to happen. The most important thing is that even though we’re all these miles apart for your special day, M and I will be thinking of you and celebrating with you and loving you as always. I’m so sorry that we can’t be there with you this year, that we can’t spend your birthday in the way that we all wanted to, but I’m glad that Daddy, Gu and Uncle A are all there to help you enjoy it as much as possible. The last 10 days have been hard, especially knowing that we wouldn’t be home in time and I hope that next year will be very different. In the meantime, know that Mummy loves you very much; that, as I tell you so many times, you will always be my baby, no matter how old you get; and be warned that, when I see you next, I’ll be wrapping my arms tight around you and hugging you close for an awfully long time. B128

Happy 12th Birthday Floss xxx