*please feel free to hum/sing that to the Italian Job theme tune to get in the mood!
Today is Undiagnosed Children’s Day 2020!
This whole week should have launched joyfully with much fanfare and a variety of exciting plans and activities, guaranteed to generate awareness, interest and much needed funds. Unfortunately as we all know, the universe had other plans & so we are all stuck, if not totally inside, then only venturing out for the essentials, scurrying away from our fellow humans & hoping no one gets too close, breathes on us or worse still has the audacity to sneeze or cough in the vicinity.
How I miss the days when a public sneeze generated a polite “Bless you” rather than people backing away in fear and/or rage. It’s definitely not a good time to have hay-fever that’s for sure!
I definitely don’t mean to make light of what’s going on with this awful pandemic causing huge isolation, suffering, financial panic and tragically, the death of far too many, dying much too soon. 😔
There are untold and incomprehensible ramifications of the wider fall out from COVID19. Much of which I suspect won’t even be clear for years to come; perhaps only even when future generations reflect on the past and the repercussions from these times. Splinters and cracks from the epicentre appearing like those on a broken mirror, spiralling out ever further and further.
For now though, it is at times like these, that my SWAN UK family are more important than ever. Who are SWAN UK and why so important you may ask? SWAN stands for Syndrome without a name. It is not a diagnosis but an umbrella term for a child who has a medical, physical and/or cognitive condition that is likely genetic in origin but of unknown cause. SWAN UK is the only dedicated network providing support to families with a child with an undiagnosed condition – A family like mine. https://www.undiagnosed.org.uk/about-us/
For those of you who know me in the “real world” or have followed me and mine via social media https://www.facebook.com/definitelynotthewaltons/ you may already be aware that I have been a parent representative for SWAN UK for the last 5 years. I am (allegedly) a mother of 4 children/young people and 2 of my youngest children are SWANS who like to keep myself and the medical profession on their toes. I have also been a member of the SWAN UK community for approximately 8 years and shared the highs, lows and everything in between.
Due to the nature of the vulnerabilities that our medically complex children present with, my family are currently shielding. Many of you reading this will be too. I know that many of my fellow parent-carers on SWAN are too. Ironically being a SWAN parent probably makes it easier to cope with the current challenges the world is throwing up at us. Many SWAN parent/carers are used to living their lives in uncertainty, in the shadows of those with mainstream, cognitively typical children. Too many SWAN UK carers and the siblings of affected children know that we live by plans that ever change, emergencies, sadly sometimes of the blue lights and sirens variety and far too many know the pain of losing a loved one before their time.
We have become used to feeling isolated, not being able to go out with our children because we don’t have enough support, be that in terms of carers or facilities – ever tried changing a 9 year old on the floor of a disgusting toilet cubicle? Probably not (I hope not) – but this is just one of the many realities for those who care for children with complex needs. So being stuck at home isn’t necessarily new to us.
Whilst every family with a SWAN child will have differing experiences – there is no common denominator of a SWAN child (apart from the fact that looking through the photo gallery of our community, they are all ruddy gorgeous, cheeky, amazing kiddos!) we all know that our children throw us curved balls, medical crises or meltdowns that just cannot be calmed with a soothing word, change of scene or face. We know the fragility of life and we know that we have to adapt and roll with the punches because we can’t change things – or change the world expediently for our children.
But we also know the vibrance of a life well-lived, of seemingly simple but oh so important triumphs – first steps tottered at 5, 6 or even later; first words painstakingly achieved by hour and hours of speech and language appointments and therapies practiced over and over again. Of new skills that come later in life, sometimes only fleetingly appearing and then regressing again, depending on the nature of our children’s difficulties.
Now more than ever SWAN UK needs any support you can offer, no matter how big or small. Although some of the activities we had planned to celebrate Undiagnosed Children’s Day 2020 have had to be curtailed, it hasn’t stopped our community spirit or our passion for highlighting the importance of belonging in a group of like-minded people who can be there for each other through out the day and night.
You can have a look at some of the things we have been up to: https://www.facebook.com/SWANchildrenUK/?epa=SEARCH_BOX or https://twitter.com/SWAN_UK?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthorhttps://twitter.com/SWAN_UK?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor You can sneek a peek at our instagram: https://www.instagram.com/swanchildrenuk/?hl=en
Never has social media played such an important part of our lives – a network on which we can connect, celebrate and commiserate. Our private Facebook group is a source of comfort and a wealth of advice and experience until we can meet again in the outside world. Please help SWAN UK continue to be there by sharing this post, others like it from the social media platforms and give what you can: https://www.undiagnosed.org.uk/donate/
