By SWAN UK member, Parent Rep for Essex and blogger, Danielle Myers - dylansstory.wordpress.com
Any parent who has a child who is medically complex means business!
They should have a sign around the neck saying ‘do not mess! (Especially before our first infusion of the day of caffeine!!)’ This includes the endless doctors, nurses and health professionals involved in their care that think they might know our children. Without any letters after our names we are more qualified than most of them.
Now please don’t get me wrong, not only could my Dylan not live without their care and input and I couldn’t perform any surgery as they can (although I would happily give it a try), I am simply saying until you have the job, like us caring for your children who are 100000% dependant on you 24 hours a day 7 days a week with no real signs of being able to become any more self-sufficient in the future and on the astounding and taxable amount of £0.369642857142857 per hour as a carer, you don’t really know them at all.
Us parents of medically complex children have had to develop a huge sense of humour!
Most of the time if we don’t laugh we will cry. That, and a really thick skin. We’ve had to find ‘our‘ main server to switch off our emotions or onto a needs-must basis. Along with appreciating the quality of life and not so much of the material things (oooooooooh always a little room for a designer handbag and sparkly shoes! every girl needs a little pick me up after all!!!)
Welcome to our world!
Syringes in handbag, clanging bottles of potent meds, subcutaneous injections and butterfly needles on hand, frustrated non-verbal children, endless hospital appointments, non existent sleep patterns, and scarily not wanting to look to far into the future.
Who knows what the future may bring?
And all of us SWAN parents with at least 2 million, 300 hundred and 66 unanswered questions. Number One being; ‘what’s wrong with my child?’
Now. Statistics I don’t have but out of the medically complex children in this world there are the ones whom, like Dylan, are #undiagnosed. This has added plenty more bumps in our already rocky road – *definition = A hindrance in some quest or extended task – as most of these children, like Dylan are serviced from the head to the toes. (See I am humorous ha ha!!)
Getting over 14 different teams, professors and their nurses at Great Ormond Street Hospital all singing from the same hymn sheet is incredibly hard work. This is another part of my job, it’s lucky the salary so good else I’d be on the look out for another one!
Which is why UCD taking place later this month, on Friday the 29th of April is so very important to us.
Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the work of SWAN UK (syndromes without a name) – the only support available in the UK for affected families.
There are lots of ways you can help support the day – why not change your social media profile picture (to this one below) or cover image and if people ask you what your picture is of, just by you telling them raises a little more awareness for both SWAN UK and Dylan’s Story. #undiagnoed #dylansstory
Did you know over 6,000 children each year are born with an undiagnosed genetic condition?
Before Dylan I had no idea. Nor did I realise it is even possible for someone to be #undiagnosed. This is not always a temporary stage. Families can face a lifetime of not knowing and struggling to access the information, support and services they need for their children.
With out a diagnosis these children (and their families) need to be taken seriously. A lot, like Dylan on several genetic studies but because of the rarity still may never get the label they’re so desperately searching for.
Children living with an undiagnosed genetic condition do not fit into any particular boxes. They have no label or title and most have no prognosis no real expectations.SWAN UK is a lifeline to hundreds of families like ours where our children all just seem to fit nicely.
When doctors say they simply cannot answer your burning question it leaves your brain frazzled. What do you mean you don’t know. You must have treated plenty of children just like Dylan?
When we were first told this back on Sky Ward at GOSH when Dylan was just six months old we were younger then, much more naive and our control was purely in the hands of these professionals whom we looked up to, desperately after their help, advise and hope of making our sick little boy better and to put this awful nightmare behind us.
Thinking the next consultant, our second opinion will have our answers, now speedily approaching six years old and with almost 50 healthcare professionals under our belts (not including the 100’s we’ve met along the way) still with no answers we’ve given in to the fact we may never ever get our diagnosis.
‘Dylanitis‘ as it was first joked about at GOSH!
Having a child who is a SWAN can leave parents feeling very isolated, not having anyone to talk to with perhaps an older child to see what the future may hold for our little boy can be a lonely and scary place.
Optimism (and prayers) is the only way forward for I am at the conclusion not one single one of us knows what’s around that corner, the only difference is you are able plan ahead in yours and your children’s life. For us, we are so grateful for every single day and cherish every moment.
Enjoy today, live tomorrow as it turns into today. Yesterday is a memory to cherish forever.
Being part of the SWAN UK community has helped me become the strong independent woman I am today. I’ve met some fabulous ladies all travelling the same rocky road as me and some amazing SWAN friends for Dylan. Thank you SWAN UK.
Dylan may or may not get a diagnosis in his lifetime but he will always be a SWAN.
This is why Undiagnosed Children’s Day is hugely important to us.
Please show your support in what ever way you can.