Category Archives: Parenting

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.

Advertisements

World Prematurity Day 2017

Another year passed and another chance to mark World Prematurity Day. It’s hard to believe that my preemies have gone from this…

to this….

Determined to win their fight every single day!

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!

    

Halloween Pumpkins

Ok, so it might not be Halloween just yet, but I thought I’d share some photos of the pumpkins that Mike and the children have spent time designing and carving over half-term. Halloween has never been a time to celebrate for me and was certainly never a significant time of year when I was growing up. My childhood was spent making a Guy for Bonfire night, rather than carving a pumpkin for Halloween and I never imagined it would become a regular part of our household’s routines. However, 20 years on from when I first met Mike in Canada and experienced trick-or-treating North-American style with my university friends, Halloween has become a family time with the children not only carving pumpkins with Mike, but often also with my Mum during half-term.

I’ll be honest, I’m not a fan of Halloween at all. We don’t go trick-or-treating with the children, though I absolutely support the work of the Teal Pumpkin Project which encourages households to provide non-food treats as a safe alternative to sweets for allergy children, so they can be a part of the experience alongside their friends. And I spend most of the week leading up to the day itself in an increasingly dark mood as October 31st is the anniversary of losing my Dad. It is always a difficult time of year for me, but I’m glad that the children are able to enjoy some fun time being creative with Mike and carving the pumpkins helps them celebrate their dual heritage in a unique way.

 

 

 

Being a part of history

August didn’t just mean the school summer holidays for our household. but also some much-needed time away from work for both Mike and me. We started our 2 week stint with a drive to London and the Queen Elizabeth Olympic Park, home to the 2017 IAAF World Championships. We’ve long enjoyed watching the athletics on TV and ever since our visit to the 2012 London Olympics and Paralympics have been waiting for the next opportunity to watch the sports live arrive. The announcement that this year’s World Championships was to be held in London caused great excitement and last August I joined the thousands of others hoping to be successful in the ballot and be offered tickets to the events of their choice. We were lucky enough to get both sessions that we had chosen, which then dictated the rest of our plans for our summer break.

Our start perhaps didn’t quite go according to plan, with packing for our trip abroad, accidents on the motorway and a necessary, but lengthy detour hampering the relaxed beginning we were hoping for. However, we got there in the end and with time enough to park our car and unload our suitcases into our Stratford hotel room before heading to the park itself. We had allowed enough time to explore Hero village, which was filled with athletic-themed activities, events, sponsor displays and the obligatory souvenir stands and I’m so glad that we had. The children had great fun competing against each other in triathlon themed challenges, trying their hand on a wheelchair obstacle course and racing the 100m sprint against Mike. It could have been so easy to have bypassed the village completely in favour of just heading into the stadium itself, but we all enjoyed the opportunity to soak up some of the Championships spirit and really immerse ourselves in all the glory of the event.

The Friday evening session was fantastic and we had the most amazing seats, which allowed us to watch the women’s long jump final with ease. The evening was filled with a great mix of field and track events including the hurdles, the hammer throw and the women’s steeplechase final, a race neither G or M knew anything about and found fascinating to watch, especially when 1 competitor forgot to go through the water jump on the second circuit of the track. However, as brilliant as that evening was, the best was yet to come and I’d be hard pressed to say who was more excited to be a part of what would become a truly historic occasion.

Since international athletics superstar, Jamaica’s Usain Bolt announced his retirement from the track following the 2017 IAAF Championships, I had been keeping my fingers tightly crossed that he would complete as part of the 4x100m relay team during the competition. Our second session was on Saturday morning and was due to include several more of the decathlon events as well as the round 1 races for all of the relay races –  men’s and women’s 4x100m and 4x400m. M in particular was incredibly excited that he might get see to his athletic hero race and the atmosphere was absolutely buzzing in the stadium that morning. It quickly become evident that we were witness to something spectacular and the whole family eagerly cheered the British teams who performed with enthusiasm and secured well-deserved places in all 4 finals. What wasn’t obvious at the time, but became sadly apparent at the finals that evening, was that we had seen not just some impressive races, but also what would turn out to be Bolt’s final track appearance as he sadly crashed out of the final with a heart-breaking injury that not only devastated him, but the watching world too. It was a great privilege to be to watch this inspirational man race and something we will all remember for a long time.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

“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:

Carnival Magic

Never being one to let something get in my way, I’ve tried to instill that same determination to succeed in both G and M. This time last year was the perfect example of this, when M took part in our local carnival parade, albeit in his wheelchair, and G stretched her self-confidence to become one of the dance captains leading their Stagecoach school as they danced their way along the carnival route. Kitted out in their 70s-inspired costumes, with the likes of Tragedy, Night Fever and Disco Inferno blaring out to get not just the kids, but all the spectators dancing too, they definitely captured an essence of Rio de Janeiro on the day.

This year we were back again, though our carnival offering really couldn’t have been more different to the party atmosphere of 2016. G and M were both keen to be a part of our church’s carnival float and relished the opportunity to choose the characters they wanted to portray from that classic fairy tale, Beauty and the Beast. With her long dark hair, G was perfectly suited to playing the part of “Belle” and suited the yellow costume I managed to pull together in the 10 days leading up to the event itself. M in the meantime, conspired with his best friend at church and agreed that he would play “Lumière“, whilst C would be “Cogsworth“. M’s final outfit certainly did the job, though the glorious June sunshine made for one very hot and slightly grumpy child once the parade was over. The carnival float itself looked amazing and the children loved being able to sing along, dance and wave to everyone as it carried them down the street. I love being part of such a fantastic local tradition and can’t wait to see what next year brings for yet another repeat performance.

NEAW 2017 – Living with the unknown

2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.

This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.

Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.

Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.

This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.