We were first introduced to Children’s Hospice South West (CHSW) in 2015 when Rosie was diagnosed with Nemaline Myopathy.
CHSW is a charity providing respite and hospice care for children with life-limiting conditions and their whole family in the South West of England. Lucky for us they have three sites, with one of them – Charlton Farm – just 20 minutes from our house. Charlton Farm is also a place for end of life care and this is where Iain and I have chosen to have our final moments with Rosie.
Knowing CHSW would be an important part of our future, I knew I had to do something to help. So on June 20th, 2015 along with wonderful friends, we did the Rainbow Run – a 5K run where we were showered with five different coloured powder paints and raised over £4,000 for the hospice. Read all about it here!
Since that time we’ve never really taken advantage of the amazing care and support Charlton Farm offers. Iain and I always felt like we could manage and that there were other families who needed the break more than us. Secretly – although I didn’t quite realise it at the time – I couldn’t quite see past Charlton Farm being the place that Rosie may say goodbye to us. I distanced us from going there because of this.
A lot has happened in the three years since the Rainbow Run and Rosie is now more demanding than ever! My mega melt down at the end of 2017 was a clear sign that I needed help. That Iain and I needed help and in fact, all three of us needed help!
Rosie is fun-loving, she loves to sing and dance, paint and play. She enjoys swimming and being a dare-devil in her wizzybug. She likes to dress up as her favourite princesses and creates make-believe with dolls, dogs, fairies and Disney characters in miniature form. Her favourite thing is a treasure hunt, followed closely by causing mayhem in shops and entertaining people by singing songs by Katy Perry (at the top of her lungs – she can be heard up to seven aisles away in Tesco!). She needs a daily dose of champagne (water!) which she sips from a plastic shot glass and needs a constant supply of beef hula hoops so she can lick the flavour off.
Rosie is in to so many things and is eager to learn but she gets bored easily. Like everything with Rosie, she needs constant help and demands attention 24/7, seven days a week.
Don’t get me wrong, I’m not complaining! I love that she has interests and wants to explore and learn new things – it’s just so exhausting! (Who knew parenting was so tough? My parents made it look easy!)
Anyway, I digress! So, after the mega melt down I knew it was time to start accepting more help and Charlton Farm was the first and most obvious choice. We contacted them at the start of the year and last weekend was our first weekend break.
We were greeted by Heather who gave us the warmest welcome, helped us with our bags to the room (we wanted Rosie in with us – we’re not ready to leave her yet!), made us a coffee, offered us cake and made us feel right at home. Rosie was off in her wizzybug exploring the empty rooms and wide corridors as we’d arrived pretty late. Iain and I just exhaled and I actually felt a huge weight just lift from my shoulders. Away from the house, the ‘to do’s’ and the routine and into support and help and company.
Our weekend there was fabulous. Kind volunteers cook breakfast, lunch and an evening meal and wash up after everyone too. Cake and tea is a help yourself job and the place is so big that although a few families are all staying that same weekend, you can choose to be in with the action or find a quiet place to retreat.
A bonus too is that a lot of people who work there used to work on PICU at Bristol Children’s Hospital. On our weekend alone we chatted to – or were looked after – by three people who had all cared for Rosie in PICU and remembered us, as we did them. It didn’t feel so new seeing familiar faces.
We were lucky that it was sunny and could take advantage of the amazing outdoor space. Swings, nature, tree-houses, calming views … quiet! We had such a great weekend and by the time we left on Sunday we felt revitalized, refreshed and ready to take on another week! Best of all, Rosie had a blast!
Huge thanks to everyone at Charlton Farm for making us feel so welcome last weekend and for taking care of us all. I’m looking at more dates now and Rosie, Iain and I can’t wait to come and stay again!
Find out more about the amazing work of Children’s Hospice South West. Charities like this make a MASSIVE and important difference to families like us. Please consider donating a few coins to CHSW (or your local children’s hospice) if you can.
My Weak Muscles 