FRIDAY 27TH APRIL 2018 – What might this date mean to you?
I guess to answer that will depend whether you are reading this before the 27th (assuming I actually manage to publish it ahead of schedule, ahem!) on the day itself or after.
It might be just a normal (whatever that is) day for you. It might be barely memorable or scored across your heart and seared burning in to your mind for a host of reasons: a birth date, a due date, a loss date. Exams? Pass or fail. Post arriving: exciting news, terrifying news, bad news or good? A day to remember or a day to forget.
I can’t predict the future (oh how I wish I could, lottery numbers anyone?!) but with more than a degree of certainty I can tell you what the day will mean to me and mine:
SUPERHEROES – Undiagnosed Children’s Day (UCD)
A day of celebration in conjunction with SWAN UK, on the impact that being undiagnosed has on a child and why this makes them superheroes! Recognition of all their varied, unique abilities and quirks to put it in a more kindly fashion.
This year is the fifth (yes 5th! I’ve been banging on every year on or around this date!) annual nationwide awareness day and the aim of the day is to raise awareness of undiagnosed genetic conditions and to raise funds for SWAN UK: http://www.undiagnosed.org.uk/news-events/news/undiagnosed-children-s-day-friday-27-april-2018/
As I type this I am aware that I have created (more) mayhem than usual. Not really a surprise. I am quite good at that. Perhaps that could be MY Superhero talent/new name – Mistress of Mayhem 🤔- I quite fancy the idea of a costume with MM on it somewhere…hmmnnn.
Don’t worry I promise not to don lycra (the world really isn’t ready for that) or wear my pants outside my trousers any time soon – although I am currently VERY sleep deprived since Minx’s feed pump fed the bed and I was woken at 3am by wails of despair. Full bed change, including mattress protector and duvet plus scrub down of sticky child = all good fun and increases likelihood I may forget myself and inadvertently dress the wrong-way-round!! Please take pity on me if you see me in the street pants on the outside loud and proud!
When bad feeding pumps happen to good people…….Bedroom floor… chaos……everything sticky and wet….teddies and cushions everywhere.
Minx improvising with fleecy onesie, obligatory unicorn slippers naturally and not to be out done, on trend mermaid blanket. A pretty ‘heroic’ effort I think….
Anyway, back to the reason for my latest chaos: G-Man and Minx’s primary school have very kindly agreed to support the SUPERHERO theme for Undiagnosed Children’s Day. Any child that wants to can wear some form of superhero attire for a small donation with all proceeds going to SWAN UK. How great is that?
We have been incredibly fortunate that the children’s school has from day one supported both the children and ourselves on a practical and emotional front and we are eternally grateful for this.
So when I wrote to school about SUPERHERO DAY and they kindly shared it with the school newsletter in suppport of UNDIAGNOSED CHILDREN’s DAY, perhaps I didn’t explain it as best I could and now various parents are (rightly) a bit peeved that there’s yet another dressing up day which they have to scrabble around to find costumes for and potentially plead with their offspring to dress up in. It was never my intention for anyone to have to go and buy (or make) anything specially and I certainly wouldn’t want anyone to be out-of-pocket, other than if they wish to make a financial contribution towards SWAN UK.
Fortunately, not only are the school supportive, so are the parents and having opened up on Facebook that I am the loon behind this Friday’s shenanigans and the reasons why, the responses have been overwhelmingly positive. For any parents (and/or staff) reading this: Thank you 🙂
Moving forward, I best confess that when I started this blog post (and as is often the case when the mood takes me to write) I didn’t have a formed idea of what I wanted to say……
I don’t want to come across all preachy, nor woe is us in terms of the day-to-day practicalities we deal with but I can’t give enough weight to the importance of knowing we are not alone in being undiagnosed and how isolating and scary it can be without appropriate support. Somehow all of that needs to be wrapped up neatly and tied in with SUPERHEROES too, otherwise there’s not much point in sharing this post!
In order to find a place to start, I spent some times searching for inspiration
playing on Facebook and found myself googling heroes and superheroes. Surprisingly there are an inordinate amount of songs and song lyrics referencing heroes – I found a site listing 50 pretty well-known artists – songs from days of yore to the 2017 offering from The Chain Smokers and Coldplay: “Something Just Like this” Actually, I generally liked many of the listed tuuuuuunnnneeeess as in the main they were pretty darn fab – who could fail to love David Bowies 1977 Heroes? (seriously if you don’t love it, what’s wrong with you?? 😉)
A lot of info on the good old web naturally refers to the superheroes we find in comic books, cartoons and on the big screen. It’s fair to say Marvel, Disney et al have a VERY loyal, hardcore fan base spanning a wide variety of genres.
‘Comic Cons’ – comic book conventions – have become a world-wide established phenomenon not just with children but grown adults too, religiously adopting the costumes of their favourite superheroes and priding themselves on knowing every character nuance and remaining in character at ALL times – as a teenager I was fortunate enough to go to New Orleans. My parents had booked on spec into an upmarket hotel chain that was surprisingly reasonable. We found out the likely reason why it was less $$$ than expected: coming down to breakfast the next morning I think we were the only hotel guests not part of the MASSIVE star-trek convention that was being hosted there. Most disconcerting to be in the lift with various characters, aliens and such like all decked out to the nines, mainly speaking Klingon……
What eventually dawned on me (and probably you by now Dear Reader) is that I have been making a hash of things, fretting about the details and getting bogged down in spurious things that have no relevance. I realised I actually didn’t need to research or learn 100 amazing but useless facts about superheroes because I am already in touch with so many real-life heroes – and definitely super ones at that – in everyday life!
How could I forget our SUPERHERO children – and by ‘our’ I mean my own undiagnosed children as well as the SWAN UK collective (massive or posse work just fine!) SWAN children and for that matter their siblings, are all heroes because they deal with so much and miss out on many ‘normal’ parts of being children on a day-to-day basis. How too could I neglect to mention the heroic parents who hold it all together? And it goes without saying the numerous medical personnel too.
In the 6 years I have been a member of SWAN UK, I have learned that SWANS come in all shapes and all sizes, all ages and stages; Our children’s needs are all uniquely different – cognitive, physical, medical or combination thereof; yet I have never come across a stronger, more supportive and cohesive network.
People whom I have only met in the virtual world or followed on social media but with whom I have established firm friendships; those who rise up against inequality, injustice, campaigning for basic rights and dignity, disability access and inclusion. Forging ahead to give hope to others coming after, inspiration and positivity to celebrate the small and seemingly insignificant milestones. The stoic reliance on coffee, chocolate and cake and ability to laugh at the grimmest and most revolting happenstance. A lot of discussions involving poo and lack of sleep. We celebrate and commiserate, sometimes all in the same conversation.
And the darker side: I have seen battles courageously fought, courageously lost. I have seen too many tragedies. Losing even one child is one too many. It is against the natural order for a parent to bury a child.
It would be wrong of me to dwell on sadness when UCD is a day to celebrate but neither can I sweep it under the proverbial rug. It is something that has touched all parents/carers of complex children in one way or another. Be that grieving for the child you thought you would have but recognising their reality, their future, your hopes and dreams for them will be of a different kind or in that most final and catastrophic of situations: death.
In truth I could not do the latter ‘justice’ for want of a better word. Whilst I can be sympathetic to such grief I cannot truly be empathic to such devastating loss or speak from the heart in the ways of those who have been through it personally. For this I feel both gratitude and guilt.
However, since I’m here to highlight and celebrate all things superhero, I can speak passionately and proudly about my own children and the issues that they take in their stride, year on year, day in and day out. I also speak with respect and recognition of all the parents and children detailed above – they are all superheroes in every sense of the word.
In my own children’s case, their benchmark of ‘normal’ is normal only to them and of course children like them. Pain – they experience for a variety of reasons and continue to go through on a regular basis. They have been prodded, poked and jabbed with needles for bloods, anaesthetics, genetics, electrical muscle testing, surgeries. The lists go on and the appointment letters stack up. They have been and continue to be tube fed via naso-gastric tubes or gastrostomy tubes in stomachs. Multiple medications at varied intervals throughout the day. Physiotherapy, supportive footwear, splints, mobility aids and such like are part and parcel of our household.
Daily there are postings in our SWAN UK community group about children on oxygen, ventilated, with seizures or undergoing complex and at times pioneering medical treatment. Of children learning a new skill with the help of technology, vital equipment and achieving all that they can.
It is sobering to reflect that in my own children’s 11 years and 9 years respectively, they have been examined by more GP’s, pediatricians, surgeons, consultants, therapists of various ilks, than I can count. I have forgotten how many anaesthetics each has had, although I know Minx numbers into double figures. There are likely more surgeries ahead based on recent discussions.
The professionals and teams involved in managing care compile a lengthy list. G-Man and Minx have each undergone tests involving noxious liquids and substances, radiation, been forced to lie still or assume a specific position for lengthy periods of time. And their experiences of being scared, uncomfortable, of invasive and complicated procedures would put many an adult to shame. As the years go on, they are less phased by it and more focused on maximum parental extortion – the more scary/painful/lengthy = £££ for bravery rewards. I say this only slightly tongue in cheek, wishing that it didn’t have to be that way but grateful for their resilience.
In the past when well-meaning folk have commented on how brave the children are, I have perhaps done them more than a little disservice. Minx is used to it I have stated matter of factly. She knows no different. It’s been that way since she was merely weeks old and now trips to Great Ormond Street are seen as an opportunity to have a girls day out around appointments or take in a show – her words, not mine. Bittersweet.
G-Man too. Although his issues have become more complicated as years have gone on, he is increasingly less fearful of requests for blood, all too familiar with the boredom of over-booked hospital clinics and lengthy waiting times. He knows how to work the gadgets on the hospital beds and which cord not to pull in the bathroom unless you want a flurry of medics crashing into the room and invading your privacy.
Erm….is it supposed to be that far off the ground?! (Older sibling familiarising himself with the controls….well he does want to be a pilot after all!)
It has been said that you should never try to meet your heroes, lest they be found to have feet of clay.
I know I don’t have to worry about any heroes I meet in the real world being fallible because the ones that really mean the most (to me) are already the biggest part of my life and have already far exceeded all my expectations and achieved so much in all the ways that matter most.
So on Friday 27th April 2018, whilst my children don their favourite superhero attire like numerous other children around the country, I will be extra specially proud of them knowing that their real superhero suits will be hidden underneath!
If you would like to learn more about SWAN UK and the ways you can support SUPERHEROES, please click on these links: https://www.undiagnosed.org.uk/support-information/ https://www.undiagnosedchildrensday.co.uk
To donate: https://www.undiagnosed.org.uk/donate/