Connie lives with mum Emma, dad Paul and younger sister Edie at their home in the Fobbing countryside.
For the last couple of years, Connie – who turns 12 in August – has been visiting Little Havens for respite breaks and social events. She has epilepsy and cerebral palsy, but it’s serious complications with her spine which means she needs intensive care and support from her parents.
The Coronavirus has forced the family to shield at home because Connie is vulnerable to chest and respiratory infections. She only left the house twice since lockdown for necessary hospital visits.
Mum Emma say, “We’re living in our own little bubble at home. Apart from video calls with our family, we don’t see anyone else. So the beauty of the Little Havens ‘Online Music Therapy’ sessions means Connie can see other faces, hear their voices and engage with them in her own way.
“Connie doesn’t speak – her way of communicating is through facial expressions. We can tell she’s excited by the music therapy because she has a beaming smile!
“Ruth, the Music Therapist, also does relaxation sessions on a Friday which I really benefit from. During those 30 minutes, I gather my thoughts. It’s my ‘downtime.’ Having to juggle home-schooling, caring for Connie along with the usual household tasks can be stressful, but this gives me the opportunity to forget about that for a short while. Connie will sometimes give me a nudge though if I’m enjoying it too much!
“We’ve been having regular chats with the Little Havens Care Team too. I know they’re always at the end of the phone if we need them.”
Connie and family have also visited the Little Havens gardens to spend some time together away from their family home. Her Mum Emma, says “Visiting the Little Havens garden was the first time we’d stepped out of the house, apart from two necessary hospital visits. When I was offered the opportunity, I felt really nervous but our carer put us at ease, explaining the measures that were people put in place and other people felt the same.
“Little Havens would be the safest environment for us to ease back into the ‘big wide world’ so I agreed. I had heart palpitations on the drive to the hospice, but as soon as we arrived I knew it would be a fantastic experience for us.
“The gardens are so lovely, they have a calm feeling to them. It really is a ‘safe haven’ for families like us when you’re scared of going back to ‘normal.’
“Although Connie’s shielding officially ended in August, we’re not rushing back to do our usual activities so we took advantage of more garden visits over the summer holidays.”
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Published in 2020
I had heart palpitations on the drive to the hospice, but as soon as we arrived I knew it would be a fantastic experience for us.