Tag Archives: sibling camp

2021: Easing out of Lockdown (again!) – 7Y2D COVID-19 Diaries Weeks 55 & 56

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The last 2 weeks have been busy both for us and for the rest of the UK. G and M have been enjoying their Easter holidays from school, not least as both have been active participants in this year’s Over The Wall Camp in the Cloud sessions once again. Every day has been a combination of crafts, challenges and nightly cabin chats and it’s been lovely to see them engaged in something other than their electronic devices night and day! I’ve been honing my face-painting skills and have discovered a new outlet for my creativity, though M has been more reluctant to let me practice now that his camp has come to an end.

We’ve been impressed once again with the #CitC offerings this year, not least as the daily activities have all been different to those they completed last summer. G in particular has connected with friends she made both through the 2020 virtual camp and from attending camp in person before and is enjoying the opportunity to chat and laugh in a safe space with some lovely individuals. I’m also really pleased to see that they will continue with the opportunity for monthly cabin chats with their teams for the next 3 months and know that both children are looking forward to that as well.

The slow easing in lockdown measures hasn’t affected us too much so far, though we did take advantage of the opportunity to see my Mum on Easter Sunday. Undoubtedly, the highlight of M’s week has been the news that our local pool has reopened and he absolutely loved his first swimming session back on Tuesday evening, something he has very much missed over the last few months. We’re not ones to rush out to our local for a swift half or a meal outside in the UK weather, and we will continue to take our own small steps in widening our world once again.

CitC Take 2 – 7Y2D COVID-19 Diaries Week 23

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With the start of the new school term being just a week or so away now, the last few days have been a great end to the extended break from school for G as she has eagerly followed in M’s footsteps and taken part in this week’s Midlands Siblings Camp in the Cloud. She has been waiting patiently for camp to start and firmly put M in his place last week when he offered to help her explore the virtual campground and point out where cabin chat challenges would be set and so on.

Being the ages they are, both children had the same set of challenges, which you might have thought would make this second week less attractive, but in fact the exact opposite has been true. A couple of the craft activities set had proved challenging for M as he found some of the finer details frustrating with his dyspraxia and he spent much of his time browsing the virtual campsite and taking part in the online activities, rather than completing the practical ones.

G, however, has tackled the crafts with relish and with perseverance; and, having discovered that watching the online videos was key, created a beautiful origami crane mobile, a working robotic hand and whizzed her way through the clues for the “locked box” challenge. She has loved joining in the nightly cabin chats and has come more out of her shell as the week has gone on. Her blue team has connected via Instagram, and if the amount of notifications buzzing through to her phone is any indication, they’re a chatty and engaged lot!

With Storm Francis hitting us hard with rain and wind this week and wiping out our new-in-lockdown 16ft trampoline by taking down one of the trees in our paddock, this week’s Camp in the Cloud has been a welcome distraction. Even better, M has re-engaged with some of the free-flow activities he didn’t complete during his week of camp, which has kept them both quiet and occupied with something other than the inevitable screens. In a summer that hasn’t quite been what we were hoping it would be, Over The Wall has kept us all sane and given both children some much-needed smiles on some otherwise grey days.

Camp in the Cloud – 7Y2D COVID-19 Diaries Week 20

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Since their first camps in 2016, G and M have looked forward to the start of every year to find out if they have got a place at their choice of Over The Wall camps. The initial outcome of this year’s applications saw both children on the waiting lists for their respective choices and, in M’s case in particular, with fingers tightly crossed that they might be lucky enough to make it to the actual camp when the time came about.

Like so many other activities, the coronavirus pandemic understandably shut down the Over The Wall camps this year, something that we all understood although it did leave the children somewhat disappointed. However, no sooner had we been advised that camp wouldn’t be happening this year, than an email was sent telling us that they were looking into a virtual alternative and to keep an eye out for future updates to be sent. It didn’t take long for the final details to reach me and both children eagerly signed up to the first ever Camp in the Cloud.

M was first up with the online South Health Challenges Camp and about 2 weeks before the start of camp his Camp in the Cloud box arrived on our doorstep. He did a grand reveal and shared opening his box with my Mum and Aunt over Face Time on the Saturday afternoon. Hidden inside was a padlocked box, sealed envelopes labelled for each day, face paints, a stationery set and, most importantly, his team t-shirt revealing he’s risen to the heady heights of being a green boy. The box also included a pot of M-friendly hot chocolate for cabin chat. The note on the container reminded him he could make it with the dairy-free milk alternative of his choice – a small thing that showed just how much OTW focuses on the finer details for each and every camper in their care. They also followed that up with an email just before camp began to remind me to check the ingredients to make sure I was confident that it was safe for M to drink.

The week of Camp in the Cloud came at a perfect time for M. It was a good start to his so-say summer holidays and proved to be a great distraction from the sad news of losing Grandpa the weekend before. The daily challenges gave him a focused activity to try his hand at and he loved being able to explore the virtual campsite, searching for the hidden Newman’s sauce bottles and participating in all his favourite camp activities in one way or another. The highlight of each day was most definitely the camp chat via Zoom, which gave him around 45 minutes to meet his team mates, accept, or set, team challenges and just chat in a face-to-face context, something he hasn’t really been able to do since lockdown began.

I was intrigued to see what M’s response to the week would be and it couldn’t have been more positive. Whilst he commented that it obviously wasn’t as good as going to camp itself, he loved being part of it and having something different to do after so many weeks of the same old, same old. Being able to dip in and out of the online platform during the day worked perfectly for my usually active child and the evening cabin chats really made it feel like camp. M was so impressed with the camp that he even contacted OTW himself to suggest that Camp in the Cloud is something they could continue to do in the future. He loves going to camp and always feels the bitter disappointment when he isn’t successful in getting a place. M believes that being able to offer Camp in the Cloud to those children who aren’t able to go the physical camp would be a great alternative and would reach out to offer the fantastic OTW experience to even more campers than they usually can. Whether they consider doing that, we simply don’t know, but anything we can do to help make it a reality we will.

Now we’re onto the countdown for G’s Midlands siblings camp at the end of the month – and she just can’t wait!

A Night of SeriousFun

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It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.

Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, “To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”

And this made me think.

It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.

I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.

The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.

It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.

This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.

20 years of #mischiefandmagic

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A lot can happen in 20 years.

In the years since our wedding in December 1999, our family has doubled in size and we’ve moved schools, houses and jobs at a rate that has to be seen to be believed. We’ve survived illness and loss within both our families and our friends, and continue to do so on a daily basis thanks to some long-term diagnoses that have oft-times caught us when we were least expecting them. Chronic illness has become a much bigger part of our lives that we could ever have imagined, but with that has also come some amazing friendships, connections and opportunities that we never even dreamed would happen and that, in many ways, I wouldn’t change for the world.

One such relationship that we have all absolutely come to value is the one with the charity, Over The Wall. They have been a phenomenal support to G and M since both first attended their camps in 2016 and are, in an almost unbelievable stroke of serendipity, also celebrating 20 years since they were first launched by UK businessman Joe Woods following in Paul Newman’s footsteps and the development of the Hole in the Wall Gang camps in Connecticut USA in the late 1980s.

So what are we doing to make this a year of note?

As far as our anniversary goes, I’m hoping that Mike and I might manage a night out somewhere special, though celebrating the week before Christmas can make that difficult as we negotiate the huge numbers of office Christmas parties that we inevitably encounter when trying to book a table anywhere without a lot of forward planning.

And, of course, it will come as no surprise that we are also working hard to raise awareness and funds to support Over The Wall’s ambitious plans to take a record-breaking 1,000 children to camp this year. Mike started the year in style with a sponsored polar dip on New Year’s Day and we’ve turned our hands to a few other things – some old, some new – to see just how much we can raise. We followed the “sparking joy” fashion and adopted a Marie Kondo approach to clearing out our wardrobes, committed to giving a regular amount each month and even stood in the entrance of our local Tesco superstore a couple of weeks ago to collect what we could and spread the word about the camps too.

We’ve taken OTW with us wherever we’ve travelled, sporting branded t-shirts, hoodies and bandanas with aplomb and almost quite literally went “over the wall” with them during our visit to Berlin.

G and M have obviously been a big part of many of our efforts, but are now launching an appeal of their own. Their yearning to do something truly spectacular has unfortunately been somewhat hampered by not yet being quite old enough to participate in the activity of their choice, but they have instead picked the next best option in their eyes and will be taking part in a sponsored indoor skydive at the end of this month.

How can you help?

Well, it goes without saying that any sponsorship you can give would be very gratefully received by G, M and OTW, especially if you can help them meet their fundraising target of £200 – scaled back somewhat from M’s original suggestion of £20,000 – by visiting their fundraising page here.

If you’re not able to donate, but live near a Tesco store in one of the following areas*, OTW is one of their Bags of Help Centenary Grants recipients until the end of August and by adding your blue token to their box, and encouraging friends, family and fellow shoppers to do the same, you will help them receive a significant grant that will be genuinely life-changing. Remember “Every Little Helps”, even if that’s by a blue token!

Finally, sharing the OTW message of #mischiefandmagic with friends and across your social media channels will not only help the charity reach even more of the estimated 50,000 children and young people living with serious health challenges across the UK, but sharing our fundraising page will hopefully bring even more cash donations pouring in to help them achieve their goals not only this year, but in the future too.

Thank you!

*OTW is currently starring in stores across: Perth & Kinross, Angus, Stirling, Fife, Clackmannanshire, South Ayrshire, East Ayrshire, Dumfries & Galloway, Scottish Borders, East Lothian, Midlothian, Somerset (inc Bristol), Wiltshire and Swindon.

Young Carers Awareness Day 2019

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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.

Welcome to 2019

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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.

NEAW 2017 – Wings to fly

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As a parent, one of the biggest challenges you face is helping your child grow in self-confidence, develop independence and to ultimately give them the wings they need to fly away from the security of the family home. There are so many obstacles to overcome along the way and when a chronic illness is thrown into the mix, it can feel almost impossible to let your child take those first steps on their own. Our determination to not let EGID define either child means that every day is an opportunity to let go of our own anxieties and concerns, and encourage them to make their own decisions regardless of the limitations that health, medicine and diet place on them. Of course, much as we work to equip G and M with the skills they’ll need as they grow up, I know that they need to learn so much more than what Mike and I can teach them on our own and so we always look for any opportunity to develop their learning from experiences that are beyond our ability to give.

That’s why once again this year, I completed the application forms for both G and M to attend the fantastic camps offered by charity, Over The Wall, knowing that their respective weeks away from home will be all about friendship and understanding and being amongst equals and building self-esteem and so, so much more. When G came home from the South Siblings Camp last year, she was a different child to the one who had left us just 5 days before. The time spent with others who have a similar home life to her was invaluable as she realised that her life experiences didn’t isolate her in those circumstances; and the focus on her and making sure that she had the best time she could helped G to find a self-worth that she had been struggling to develop at home and at school. Likewise, M had what could only be described as the best week ever as he was able to spend a week away from home without family for the first time in his life. He tried his hand at activities that had terrified him before and he too found great comfort in the realisation that he is not on his own in his health challenges.

We were all delighted when G heard she had a place at this year’s Siblings Camp and we couldn’t wait to hear all about her adventures there as a Green Girl. From the moment I dropped her off with some familiar faces, including the unexpected, but much welcome presence of G’s buddy from the GOSH YPF who was volunteering for the very first time, I knew that she was destined for another great week. Their unfailing attention to detail and care for the young people they were responsible for during the camp was impressive. We received a phone-call on the second night to say that whilst G was having an amazing time, she was struggling with the “fancy” gluten- and dairy-free food that the chefs were lovingly preparing for her and wasn’t really eating as much as they would like.  A quick catch-up to understand G’s food preferences and the reassurance that they would continue to keep an eye on her was all I needed to be certain that their care was absolutely everything I could want it to be.

M, Mike and I were all able to make the journey to pick G up at the end of her week away and were all immersed in the joy that is the camp bubble of OTW for the short time that we were there. Our Green Girl had tried her hand at most things, exceeded her own limitations and came away with a much-deserved pride in her achievements. This photo of a beaming G at the top of the climbing wall reflects her determination to overcome her self-proclaimed fear of heights and the pride she felt when she surpassed what she managed last year to achieve: more than she had ever believed herself capable of doing. Unlike the previous year, when she had been reluctant to take part in the Talent show, this time round, she went prepared with a routine she’s been working on during her school dance club and performed with a confidence and grace that reaped an impressive number of compliments as well as moving her YPF buddy to tears with her passion for her dance. G became good friends with several in her team and has been keeping in contact with them in the weeks following camp. She has developed 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.

It is thanks to Over The Wall that my children are becoming all that they can be and are learning that chronic illness doesn’t have to be a hurdle to anything they want to do. Over The Wall truly gives both our children wings to fly and our thanks just don’t seem to be enough.

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.

 

OTW Siblings #Take Two

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This time last year, this happened:

and since the start of February, when the email finally arrived in my inbox confirming that G would once again be heading off to the depths of Dorset for the fabulous Over The Wall South Siblings Camp, the clock has been counting down. I’m surrounded by reminders of this amazing organisation wherever I look, from the screen saver on my phone to the calendar on my desk at work and it’s reflected every time I hear G or M, or sometimes both, bursting into a song from their time away at camp.

The next 5 days are going to be busy ones as I wash, iron, sort and pack G’s clothes for next week. We need to make sure she has enough for every eventuality – sunny days, wet weather, swimming, archery, arts and crafts, the talent show and the all important disco. Unlike last year, when she refused to even consider being part of the talent evening until she got there and then taught her team, the totally epic Purple Girls, a dance routine to Omi’s “Cheerleader” track; this year G is torn about which talent in particular she wants to perform. It could be a clarinet solo, which M would love her to do, or it might be a new dance routine, this time with costume. I’ve told her she really needs to have made her decision by the weekend, so I can ensure she’s got everything she wants with her when we set out on Monday. We’re so thrilled that G has the opportunity to benefit once again from the fantastic work done to support siblings of children with health challenges and I can’t wait to hear all about this year’s week away from home with OTW.

You may remember that since G’s adventures with Over The Wall last year, we have been raising awareness and funds for this incredible cause and I created this video to show our reasons for supporting them:

Young Carers Awareness Day 2017

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Today is Young Carers Awareness Day, a national day for the recognition of the estimated 700,000 Young Carers in the UK. I’ve written before about Young Carers and how G was finally recognised as one last year. She now regularly attends our local carers support group and has developed friendships with a couple of other girls who are in her year at her secondary school. Young Carers can care in a number of ways, the most obvious being giving physical help to family members, but, as we discovered with G, the emotional and psychological support given is just as important to recognise and can take just as big a toll on the young person. Organisations such as the Carers Trust, Barnados and Over The Wall all work to ensure that these young people are given the same opportunities as their friends and have time to be a child. This support is vital to ensure that G, her friends and others like them have as happy, healthy and balanced a childhood as they can.

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