Tag Archives: love

Young Carers Awareness Day 2019

Today is Young Carers Awareness Day 2019 and the purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs. Young Carers often struggle with mental health problems of their own due to the strains they can find themselves under, hence the launch of their #CareForMeToo campaign.

I was recently invited to write a blog for Over The Wall about the impact of their camps on our family and I chose to particularly focus on the importance of the siblings camps for children like G, who is recognised as a Young Carer locally. I thought I’d take the opportunity to share my thoughts here too.

 “…when one person in the family has a chronic illness, the whole family has it…”

Jamie-Lynn Sigler

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself.

For the last 8 years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines.

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye.

She is, without a shadow of a doubt, the unsung hero in our family story.

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.

From the interruption of frequent hospital appointments to badly timed admissions over her birthday 2 years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall Siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too.

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.

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Battle of the Birthday cakes

December is always a busy month for our family, what with birthdays, anniversaries and Christmas to celebrate and squeeze in alongside the end of term and all the added demands that that almost always inevitably brings. As well as the last-minute rush to make sure cards have been written (and sent) and that presents have been bought (and wrapped), I also have to make sure I have time to bake the perfect cake to help us celebrate G’s birthday in style.

Over the years I have tried my hand at all sorts of cakes and I love spending the time to let my creative side really come out, though Mike might disagree as some of my more complicated masterpieces have kept us up into the early hours as I strive to get every detail just right. Last year I attempted a gluten- and dairy-free red velvet cake for G, which tasted great, but didn’t look as appealing as I’d have liked and so this year I was determined to create her a special treat that looked and tasted the part. G is a definite chocolate lover, something that can be a little tricky when you’re dairy-free, but there are lots of great dairy-free options available and I was determined to use a mix of them to make G a cake that the whole family, including M, could enjoy.

The obvious starting point was the beautiful chocolate mayonnaise cupcakes that I had perfected for Mike’s birthday and which I knew I could turn into a fantastic 2 layer cake. I wanted to create a really sumptuous filling and to my delight discovered this salted caramel flavoured icing mix as I wandered around our local supermarket. Mixed with our regular dairy-free spread, this made the perfect buttercream filling and topping for G’s cake. I finished it off with handfuls of Freedom mallows, shavings of Moo-free chocolate and sprinkles of Sainsbury’s Free From White chocolate chips. The final cake was a huge success: gooey, delicious and everything my chocolate-lover could have wanted for her 15th birthday.

Once G’s birthday celebrations finally came to an end, I was then on to my next birthday cake project, which was to bake a cake for my Aunt for her birthday on December 23. This year was her first celebrating without my Uncle, who sadly passed away earlier in 2018 and the plan was for a family gathering at my Mum’s house to mark the day. Mum was keen for me to bake some more of the chocolate cake that I had made for G’s birthday, but I wanted to do something a little different, especially with Christmas right around the corner, and instead settled on one of M’s firm favourites, banana bread.

When it came to making the cake, G was a huge help and offered to bake a dozen cupcakes, whilst I decided how to decorate them. She did a great job and by the time I’d found the perfect design and all the necessary ingredients, there were 12 wonderful looking cupcakes waiting and ready to go. I took inspiration from the front cover of a fantastic cupcakes cookery book that I’ve used before and gave a nod to my Welsh heritage with a plateful of sheep cupcakes. Safe buttercream icing, a small supply of Freedom mallows, safe cocoa powder and a little fondant icing was all that was needed to create these fun birthday treats,which were not only enjoyed on the 23rd, but saw G and M through Christmas too.

Welcome to 2019

It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.

To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.

However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.

Here’s to a year of discovery and wonder for us all.

Finishing the summer in style

With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.

14 years

“…But it’s been
Fourteen years of silence
It’s been
Fourteen years of pain
It’s been
Fourteen years that are gone forever
And I’ll never have again…”

14 years since I last spoke to you; since I heard you laugh out loud at Terry Pratchett books; since you held my hand or shared a story. It’s been a tough year and we’re now missing not only you, but other much-loved family members to spend time with. 14 years too long xxx

 

 

Birthday Wishes

Turns out that October 15 is a popular day for birthdays. Old school friends, work colleagues and even M’s adored Godmother, but we’re celebrating a special day a lot closer to home. Cue Friday night celebratory meals, Saturday evening at the theatre and a Sunday afternoon spent baking a batch of M-friendly Chocolate mayonnaise cupcakes all to mark this occasion.

So, what more needs to be said other than Happy Birthday to our favourite husband and Dad!

Downtown Toronto

We really were trying to squeeze as much as we possibly could into our 2 weeks in Canada this time round and so decided to end our visit with just 3 days in downtown Toronto to do a little sightseeing that we hadn’t done before. When we thought we were going to be visiting at Christmas, M had been really keen to have a repeat trip to Niagara Falls, somewhere we’ve visited with the children on 2 previous holidays, as he was desperate to see the Falls frozen, though we had warned that it might not happen even during December. However, visiting in the summer changed our plans a lot and Mike was really keen to fit in a day trip to Toronto Island if we could, something that we managed to do without any problem whilst we were staying downtown.

Our home for these 3 days was an apartment within walking distance of almost everywhere we wanted to go and, ironically, just across the road from that of another friend of ours, who we didn’t realise was living nearby. Our plans, as always, were fairly loose, though we had booked tickets for sports games and theatre trips to provide some structure for each day. We decided to visit the CNE – Canadian National Exhibition – with the same cousins we’d headed to Canada’s Wonderland with and had lots of fun wandering between the various exhibits. The day we went happened to be Veterans day and all 4 children enjoyed looking around the Canadian military section and exploring the tanks and aircraft on display. We even managed to find a stall selling Beavertails – a deep-fried dough sweet treat, shaped like a beaver’s tail – and bought a couple of us all to share. This treat was obviously not gluten-free as well as being covered in sugar, so G, M and I only took a small mouthful each, whilst Mike, his brother and the rest of the family enjoyed the rest.

Our day on Toronto Island was beautiful and started with a boat trip across Lake Ontario in glorious sunshine. The children were keen to explore what was there and we could easily have spent another day or two on the island itself. However, our time was limited and so we enjoyed more rides in the small island theme park, though nothing quite as adventurous as those at Canada’s Wonderland, before heading off for a short walk, a trolley tour of the island and the opportunity to dip our toes into another of the Great Lakes to finish off our day. We had to cut short our stay on the island as we were heading to a baseball game in the evening, but we managed to find time to walk some of the streets of Toronto to the Eaton Shopping Centre, before exploring the underground shopping concourses back to the stadium. G found the underground “streets” particularly confusing to walk and couldn’t quite believe that it was possible to walk the approximately 15 blocks from the Eaton Centre to the Skydome completely underground. All in all, it was a busy few days, but the perfect ending to our 2018 Canadian Adventures.

Her Inner Thrill-seeker

The next stage of our Canadian road trip found us driving over 5 hours east from Lake Huron to the peaceful resort of Beachwood, Lakefield to join a number of our friends and their families for a short summer break. We had been lucky enough to book a room in the main lodge for a couple of nights, which gave us the chance to catch up with these friends who we might otherwise have missed. It was also a fantastic chance for both G and M to catch up with some of their godparents, as 2 of G’s godfathers and one of M’s numbered amongst our friends staying at the resort that week.

G and M were both excited at the prospect of spending a few days lakeside and were delighted to find that they could swim in both the small pool and the lake itself. The resort was amazing and we were easily able to walk between our room and the various cottages our friends were staying in whenever we wanted. Our children were the oldest there and soon became popular, G in particular, with the younger crowd. It came as no surprise that they also befriended some of the other children on site and spent a lot of time moving between pool and lake to play games with whoever was around. As well as the swimming, the children also loved the opportunity to go out in a canoe (or should that be kayak?!) with Mike, hitch a lift on the speedboat when it took guests out water-skiing and spent a huge amount of time climbing and playing on the giant inflatable obstacle course in the middle of the lake. It was here that G started to find her inner thrill-seeker, something that came as a complete surprise to us all and was to develop even more as our holiday continued.

With our couple of days with friends behind us, we travelled south to the town where Mike grew up and our home for the rest of that week. Our primary aim whilst we were there was to visit Canada’s Wonderland, an awesome theme park and one that I had never before been to, despite my numerous visits over the last 20 years! Not only did we have 2 days of incredible fun, but we spent it with the rest of the family we hadn’t yet had a chance to see and both G and M loved every moment of racing around the park and trying out the rides with their cousins. It was here that G’s newly discovered thrill-seeking personality really came into its own as she and her cousin, H, challenged themselves to ride pretty much every roller-coaster or ride they could find. The boys were slightly less keen to ride the bigger rides, which suited my sister-in-law and me just fine, and quickly found themselves enjoying similar experiences, which were very different to those their sisters were undertaking.

G’s confidence in trying out so many different roller-coasters and rides – there’s only 1 I can remember her refusing to go on which the rest of us did – came as a complete surprise to us all. Our trip to Florida 4 years ago found M being slightly more adventurous than his big sister and I really hadn’t expected things to change as much as they did. It was fantastic to see G and H really enjoy the time they spent together, usually with Uncle Dave, though Mike found himself on some rides that he perhaps wouldn’t have otherwise chosen! It really was an amazing time with both family and friends and we could barely believe that we were heading into the final few days of our holiday as we packed up and moved on to our final destination in downtown Toronto.