Blog- Just Bring the Chocolate

#Undiagnosed Children’s Day 2016 (the video)

Published on 29th Apr 2016 by Renata

As I've just about recovered from the stress of trying to do a half decent job of putting together a video for Undiagnosed Children's Day (representing over 2000 SWAN UK members, no pressure!), and because pizza hut assured me that they could feed the children, I have finally found a small sliver of time to make sure that in the chaotic rush to meet deadlines, I don't lose sight of what Undiagnosed Children's Day means to me. As each year passes I think it is as important for me to spend time looking back and appreciating how far the Undiagnosed community ...

40 things that the last 40 years have taught me

Published on 27th Jul 2015 by Renata

I turned 40 today, and while my children slept, and the house was gloriously quiet, I decided to spend a bit of my birthday thinking about what my life has taught me so far. Here are the first 40 things that came to mind. Growing old is a privilege that we should never stop appreciating no matter how many wrinkles we see in the mirror. Happiness is a choice that we make each morning, it is not something that will be delivered to your door gift wrapped. Happy people aren't luckier than you, they just choose to define their lives ...

The world’s first specialist nurse for undiagnosed children – Happy Undiagnosed Children’s Day 2015

Published on 24th Apr 2015 by Renata

You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete. – Richard Buckminster Fuller Almost a year. That’s how long it’s been since I have actually clicked on a button to publish my thoughts publicly. A lot can happen in almost a year, including events that make you realise that sometimes fighting for the greater good in the public eye has to be put on hold to protect those you love. But my quietness on my beloved little blog does not mean that I have not still been trying to ...

To all the fathers of special needs children

Published on 15th Jun 2014 by Renata

Dear fathers of special needs children, I don't get to meet you that often, you're not a rare species so much as a precious one. As much as I'm conscious that there will be men who will take a very active part in their disabled child's care, the fact is that the majority of people that I sit opposite at hospital appointments are women. I do see a lot more fathers when the children are just starting out on this journey; fathers who don't have the faintest idea of the simplest baby led weaning first foods. The sense of gravity that descends ...

Post Pals: Why we look after siblings

Published on 9th May 2014 by Renata

I wrote this post for one of my favourite charities Post Pals back in 2010. I still remember lying on my bed very late at night tapping the words into my phone as Dominic slept in his hospital bed next to me and my other two children slept miles away in their own beds at home. When I wrote this we'd been apart for four months. I didn't know at the time that we'd be apart for another 4 months more. Post Pals reminded Elliot and Lilia to smile, they minded them that it was ok to have fun and ...