Tag Archives: invisible illness

The Power of Sunflowers

Nothing brightens up a gloomy day like a beautiful sunflower. Tall, majestic and reaching for the sun, its bright yellow colour is sure to cheer up even the darkest of moments. There really is just something intrinsically cheery about this flower to my mind; but did you know just how powerful sunflowers can be?

I am, of course, not talking about the flower itself, but rather the incredible Hidden Disabilities Sunflower scheme, launched in 2016 in response to a query from Gatwick Airport as to how to better its help to travellers passing through its doors and since adopted by numerous airports, supermarkets and other stores and businesses across the UK as well as slowly being recognised worldwide. The scheme uses bright green lanyards covered with sunflowers to indicate that the wearer has a hidden disability and therefore might need additional support, time or space to use that particular facility. All done in a subtle yet visible way.

We hadn’t engaged with the sunflower scheme previously, but given G’s recent challenges with panic attacks and anxiety as well as M’s ongoing health issues and his own anxieties when it comes to travelling with his medicines and foods, the time finally seemed right to give the sunflower lanyards a go during our Christmas trip to New York. I requested them through the Heathrow airport website and was delighted with how promptly they arrived with us with no hassle. They formed a part of the big reveal on Christmas day and both children were wonderfully willing to wear them as we travelled with G having to be reminded to remove hers once we reached our hotel in NYC.

The support given throughout the airport was fantastic and extremely thoughtfully and carefully given. The Virgin Atlantic staff at check-in approached Mike and I to see what additional help we might need, but didn’t ask questions in front of either G or M. Our journey through security was remarkably easy as the airport security staff opened a new lane for us to go through without comment and were then careful to minimise the examination of M’s medicines and the food that we were having to carry with us. I was impressed with just how well all the staff working at Heathrow appeared to have been trained and how they offered us help and support without making a fuss.

The only problem encountered was that M found the material of the lanyard uncomfortable to wear, complaining it irritated his neck, so instead I attached it to his backpack, which made it less easy to spot on a first glance. I’m sure that he will not be the only person who will struggle with this because of sensory issues and so was glad to be able to give some constructive feedback to what is otherwise a fantastic scheme. Our sunflowers were unquestionably powerful during our Boxing Day adventures and will no doubt be something we make use of again the next time we travel.

All Different, All Equal

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This week is Anti-bullying week and this year the campaign has adopted the tagline “All different, All equal” to promote difference and equality in schools. As the Anti-bullying Alliance’s website states, the idea behind this is to “…help children and young people celebrate what makes them, and others, unique and help them understand why it’s important that every child feels included in school able to be themselves without fear of bullying...” This has struck a particularly resonant chord with me as feeling different to classmates is something that not only do I recall from my own school days, but something I am aware both G and M have felt over the years.

For me, and let me be brutally honest right now, I hated every moment of living with T1D as a teen. Not only was I having to deal with the challenges of impending adulthood and puberty like all of my peers, but my T1D added another layer to the emotional mix that I really didn’t want to have to face. At school I felt like the odd man out. I didn’t really know anyone else my age with T1D and I was the first diabetic in my school. I suffered extreme teenage angst about not being able to buy sweets and chocolate from the break-time tuck shop and that seemingly small thing became a massive problem that I struggled to overcome. My friends accepted my differences far more readily than I did and yet I felt alienated from them. My own anxieties and poor self-image became mountains I just couldn’t scale, particularly when some of the other girls in my school year began to exclude me from friendships that had been there since I was little and threw cruel words in my direction which hit incredibly deep. Whether they had truly identified my lack of self-esteem as an easy target for their unkind comments and actions or not, I can still recall just how devastating that time in my life was for me. I’m sure that I was not on my own with those feelings, but I felt isolated in a world that seemed to be quite happy without me.

Sadly, G struggled similarly during her Infant school years when so-called friends who had helped ease her move to a new school, discovered that her health issues could be used as a taunt against her and caused her unbelievable emotional pain. Thanks to a fantastic and supportive Year 2 teacher, G was encouraged to tackle the bullies and their behaviour head-on and she learned to stand up for herself, something I didn’t learn until I was much, much older. I know that her gluten- and dairy-free diet still makes her feel too different to the rest of her tutor group for comfort and she has struggled with sticking to the restrictions, especially when her friends are enjoying treats that she would love to be able to eat. We’ve worked to fill her lunchbox with foods and snacks that make her feel a little more “normal” and a part of the crowd, and I will continue to hope that this doesn’t become a cause for bullying as she moves her way through secondary school.

Likewise, M’s complex medical needs have left him being subjected to cruel words and unkind actions in the past, something that is not unusual in the world of chronic illness. Whether it is an obvious physical difference, or something more hidden like T1D or allergies, the sad truth is that children can, and will, be cruel. All children are fighting to find their place in the world and will look to find their footing without regard for those surrounding them and especially not for their feelings. As parents we need to teach our children about the beauty in diversity and encourage them to be kind in their thoughts and deeds. My children are wonderfully unique as are their friends and that is something to embrace wholeheartedly and without reservation. This year I will be making sure that they understand the truth in these words: All different, all equal.

Beating the Blues

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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.

9a78a65173e2885ea3a8c8b9d3ccd1ac 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.

NEAW 2016 – The Hidden Truth

7 years to diagnosis

Searching for an answer