Tag Archives: big sister

Welcome to Adulthood

2 Replies

18 years ago, as we waited for you to finally arrive, I wondered what I would want to share with you when this day came: what stories we’d have to tell, memories to reminisce on or words of wisdom for you to take with you as you stepped out into the adult world.

I’m still considering even now what knowledge I can usefully share, what words will express the depth of love we have for you…will always have for you and how we will support you as best we can as you find and take the next step of your journey. 

I know to share that we loved you from the first moment we knew we were expecting you.

Felt awe when I first felt your kick, reminding me of your presence even though I was yet to meet you.

Fell more in love with you the first time I held you in my arms with a fierce protective love that only grew stronger as I fed and comforted you in the middle of the night; and every day since.

Worried about you, fought battles you never knew were there and made the best decisions we could to keep protecting you and allowing you to grow to be who you were meant to be.

I’ve watched you grow and change from a contented baby to a awesome big sister and now, on the cusp of adulthood, a young woman I’m proud to call my daughter.

Is that enough? I still don’t know, but as we celebrate your 18th birthday today, know that we love you, always have and always will.

Love you always sweetheart xxx

Sweet Sixteen

3 Replies

We did, of course, always know that this day would come, but even so, how is it that my eldest baby turns 16 today?

When I look back at the first 16 years of her life, they have not been as easy as any of us imagined or would have wished for when we first held her in our arms. I don’t think our wishes at that moment in time were for anything more than a healthy baby and a happy childhood filled with rich experiences and every opportunity we could offer her. We were determined to encourage that newborn to try her hand at anything she wanted and to reach for her dreams with a belief that she could achieve them.

It’s no surprise that life got somewhat in the way of those plans, what with the advent of her own unexpected health challenges, let alone the more demanding ones of her baby brother, and yet we continue to tell her to shoot for the stars in whatever she does. Fear and anxiety have plagued her over the last couple of years, and yet she keeps going, hopefully knowing that Mike and I have her back and will be there to not only support her, but to walk every step of her journey with her as well as pick her up and carry her if she needs us to.

To say we’re proud of G would be an understatement. Our funny, generous, gorgeous girlie may be able to throw the monster of all teenage tantrums at times – her 2 year old self had nothing on her now – but she has an incredibly gentle and beautiful spirit. She may find the stress of exams overwhelming, but she perseveres with her studies and loves nothing more than curling up with a good book or listening to music in her downtime. Her passion to dance is inspiring and she finds a true release through her movements that you can see reflected in the joy that crosses her face every time she performs, be that on stage or in the safety of her own bedroom.

As I sit here tonight, what do I wish for the next 16 years and beyond? I wish her health and happiness and a future that’s filled with dreams, just as we did when she was born. I wish her friends as well as family that will love her and support her, no matter what, and a home that’s filled with love, even when tears and anxieties overwhelm. I wish her a career that’s fulfilling and satisfying, even though she has no idea what she wants to do as yet. Most of all, I wish her every confidence to be her; to be true to who she is and to always be able to stand up for herself and for others.

Sweet 16th birthday sweetheart, we all love you very much xxx

#NationalSiblingsDay

Leave a reply

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.

She loves him enough to share her blanket!

14 already?!

Leave a reply

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

 

Young Carers Awareness Day 2017

Leave a reply

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.

ycad2017-whoarethey_a3poster-page-001

Beating the Blues

1 Reply

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.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks 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.

In the blink of an eye

3 Replies

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

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

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

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

All the Fun of the Fair

4 Replies

There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

IMG_0617[1]

What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

And the money kept rolling in…

2 Replies

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 otwmaking 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.

IMG_3019

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. indexThe 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.otw

NEAW 2016 – Through the eyes of a child

2 Replies

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!