I don’t have one, whilst Mike’s the youngest of three. At the end of the day, though they might fight like cat and dog at times, the one thing I can confidently depend on being true is that, no matter what else happens, G and M always have each other’s back. They can criticise the other to their heart’s content, but woe betide anyone who thinks to express their opinion of one sibling in the other’s hearing. Even when one is trouble at home, the other can often be found defending what happened (she only did it because of something I said), offering cuddles to calm down or rushing off to find Cat (for M) or the replacement blanket (for G). Today is #NationalSiblingsDay, so I thought it only fitting to recognise the infallible bond between my 2.
I really don’t know how we got to this day as it doesn’t seem like a year since we celebrated her becoming a teenager and certainly not 14 years since we welcomed her into our lives. 14 years filled with love and laughter, tears and tantrums, moments of great pride and times when we’ve wondered if we were getting the whole parenting thing even vaguely right. Today we have a beautiful, sensitive, generous and kind-hearted young lady as an invaluable part of our family, even if we could do without the slamming doors, stomping feet and looks of pure disdain that do radiate from her almost weekly without fail.
Happy 14th birthday Floss – you are our whole world. Love you always xxx
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.
Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.
Thanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.
So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:
- Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
- These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
- OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation
And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.
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 M-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 that 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!
It 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
Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about making sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.
This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.
During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. The reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.
I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.
This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.
Last year M decided to create a presentation that he could use to explain EGID and his feeding tube to his school. He and G worked together to produce a video telling the story of the first 9 years of his life, which they then showed to all the classes and took part in 8 separate Q&A sessions to help their peers understand more; something they did with great success. This year my dynamic duo took on the challenge again and decided to work on something completely different. M worked hard to write a story looking at EGID through his eyes, which G then illustrated and, with a little help from me, they have made a video that reflects their understanding of his chronic illness. M has again shown the film at school, although this time it was used in today’s whole school assembly rather than shown to each class in turn. Our aim was to explain EGID in a way that children would completely understand and hopefully would enjoy. We really hope that you enjoy it as much as we loved making it and please share it on to help us raise as much awareness as we possibly can.
Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!
When you are tube-fed, I think it’s only natural to expect the support of your nearest and dearest, especially in the case of the tube-fed child. In a recent interview about her MS diagnosis, actress Jamie-Lynn Sigler from the US TV show “The Sopranos” said that “when one person in the family has a chronic illness, the whole family has it.” and this really resonated with me. M, I hope, has never needed to question the unfailing and unconditional support that Mike and I will give him along every step of his journey, but it’s not just us who have walked that way with him over the last 12 months. Without any say in the matter, G has been dragged along for the ride too and has been a great comfort and support to M when it matters most, arguments and fallings-out aside. I have talked before about the amazing community that surrounds our family, but G has been something of an unsung hero in the story. Over the last few years we have seen her struggle to cope with the reality of having a chronically ill brother, which has manifested itself in behaviour and attitudes that are less than ideal and which need love and understanding in the most testing of times. We work hard to try to give G as much time as we can, but sometimes that can’t be as much as we’d want, especially when going through a particularly tough time with M. Sometimes siblings need more time than the parents can find, so who is it that can help parents support these young supporters?
Many people will have heard of Young Carers projects, but perhaps will not realise how massive and vital a role these groups can play in families dealing with chronic illness. Young carers are defined as “children and young people who often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.” Being a young carer is an isolating experience as the child may be reluctant to discuss their home life with friends at school for fear of bullying and will often feel that they are in a unique situation. Young Carers groups try to meet on a regular basis to give the youngsters a much-needed break from the day-to-day, the opportunity to meet other young carers who will truly understand the pressures and strains they are under and the chance to have fun and be a child. Depending on the location, and sadly on the funding available, these organisations may offer evening clubs, weekends away, days out and even holidays as well as friendly advice, information and counselling to both the young carer and their family. In our area, there is also a school worker who runs lunchtime clubs at some of the local secondary schools, hold awareness assemblies and will act as an advocate for the child if needed.
Frequently these youngsters don’t identify themselves in the role of a young carer and it came as no surprise to me that G didn’t as I certainly had never really thought about her in terms of being a young carer until fairly recently. Thanks to a well-placed poster, a stray comment at school and some gentle prodding from a fab EGID friend, I contacted our local Young Carers group, filled in their referral document and sent it off with my fingers tightly crossed that something helpful would come from it. With the most amazing coincidental timing, at almost the same time that I was waiting for a reply, G had spotted a poster in the Year 7 canteen, took a photo on her phone and showed it to me, asking if I thought this was something that she could find out more about. Delighted that she was interested in this support and wanting to encourage her to investigate the opportunity under her own steam too, I agreed that she should contact the teacher named and see what further information she would be given from within school. She and a close friend in a not-too-dissimilar position have since met with this teacher a couple of times and have been given more information about our local young carers group as well as a list of useful contact names and numbers.
We also had a positive response from my referral form and last week G and I met with Hannah, one of the Young Carers team. She was with us for about an hour and talked to G about all things Young Carers. Having established that G understood what was meant by the term “young carer”, Hannah then took the time to explain how G fit into that role and then they discussed at length just how G helps M and the rest of the family and how she feels about it. I stayed in the kitchen the whole time, but switched between sitting at the table with them and carrying on with preparing feeds, meds, packed lunches and dinner in order to give G the chance to open up about her feelings. I reassured her that we wanted her to be 100% honest about the emotional impact that M’s illness has on her and was pleased to hear her being just that. Nothing she said surprised me in the slightest and I found it a relief to see her open to the idea of the Young Carers groups and all they can offer. She is keen to get started as soon as possible and is just waiting for the paperwork to be processed and the invitation to drop onto the doormat Hogwarts-style!
I am fascinated and pleased to see that there is an increasing awareness worldwide of the lasting impact of chronically ill siblings on children and the need to seek ways to effectively support them as they grow up, often in the shadow of the sick child. Last year I became aware of another fantastic project, this time by Australian photographer, Alexandrena Parker and Rare Voices Australia, entitled The Forgotten Ones, which sought to highlight this aspect of the rare disease community and “…to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.” This is just one person’s small step to make a difference to these unfailing supporters, but with the help of projects like The Forgotten Ones and Young Carers, we can all help support our sick children and their unsung heroes.
*The wonderful charity, Over the Wall, also provides respite camps for sick children, their siblings and their families, either all together or separately. You can find out more here.
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, 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; instead 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.
Happy 12th Birthday Floss xxx
For as long as I can remember – and trust me, my long-term memory is legendary in our household – G has been passionate about learning to ride. Both she and M did a brief stint at a nearby riding stable when she was about 5, but school, hospital appointments and other hobbies soon absorbed a lot of our time and riding somehow fell by the wayside. G frequently talks of her plans to own horses when she’s older and has declared on more than one occasion that she has no plans to learn to drive when she reaches 17, but will instead ride her horse wherever she needs to go. Over the last 18 months or so, she started asking about the possibility of riding lessons again and it was then that my Mum came up with the idea of rewarding all her hard work for her SATs with a short course of lessons.
It took careful planning, the odd bit of rearranging and some tentative pencilling-in, but finally everything was sorted and G started her lessons. Her first lesson was a group one, but it quickly became obvious that she would learn more and progress quicker with some more focussed teaching and so we switched to a 30-minute individual lesson every other weekend. To say she is delighted to be fulfilling this long-held dream is an understatement and she has taken to it like the proverbial duck to water. With just 3 lessons under her belt, she is already cantering around the indoor arena with confidence and impressed not just her riding instructor, but me too, with her sense of balance and ability to trot round with her hands and arms in every position imaginable except where you’d expect them to be.
Needless to say, horse-riding has become her favourite pastime and we have been inundated with requests for lessons as a gift from anyone and everyone prepared to contribute for both her birthday and Christmas. It has been fantastic to see her enthusiasm grow and the wait between lessons proves almost unbearable for her at times. What is even better is that this is something just for G, there is no irritating little brother to steal her thunder, although he has come along to watch her ride once or twice. The consequences of having a brother with a chronic illness mean that all-too-often G has been relegated to the sidelines as we’ve worried about M’s health or agonised over decisions regarding his treatment and diet; but in horse-riding, the focus is all on her: her teachers know nothing about M and his health and those 30 minutes are spent doing something she really, really loves. The lessons have also become an opportunity for G and me to spend some much-needed and precious time together, to chat about school, friends and life in general without the constant demands of M dragging my attention away from her; something I think we both have come to value.