It is fittingly ironic that yesterday, we received further communication from genetics regarding the 100,000 genome project (you can learn more about this: https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/) on the eve of Undiagnosed Children’s Day. Whilst the letter outlined what we already broadly knew (nothing has so far been found to explain the complexities related to Minx and potentially… Continue reading Happy Birthday to You – My Swan Song
Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?
Undiagnosed Children’s Day 2020 with SWAN UK
* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….
A life less ordinary…. when your children are hell-bent on confounding the medical professionals…
A European Family Holiday….
Growing up is hard…. for parents ….
The demons that prey at 3am…..
verb [ I ] US
to deal with problems or difficulties, esp. with a degree of success:
Inside homes, many residents coped with broken glass and collapsed walls and chimneys.
Victims cope with feelings of anxiety, pain, anger, and fear.
(Definition of “cope” from the Cambridge Academic Content Dictionary © Cambridge University Press)
Who cares for the carers? There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore. As a rule, I am… Continue reading Relentlessly Relentless….