“Lucy has a big personality and is very sociable, happy and determined. She may be non-verbal but is a master of reading situations. She makes very clear choices in what activities she wants to do - and one of those choices is music therapy with Demelza.
Music is a big part of our lives as a family, even though none of us can read music nor play an instrument properly. We love listening to it and making different sounds with our collection of instruments and singing.
We really benefit from the weekly music group sessions we have on Zoom, along with other families supported by Demelza. Victoria, the Senior Music Therapist, themes them each week and we learn so much about different styles and tunes – we have been introduced to classical, pop and world music pieces. Lucy loves to dress up to reflect the weekly themes too.
We look forward to these sessions every week and they are a fun start to our weekends. Music is a great way to engage with feelings and many times we have been moved by some of the classical music Victoria has played; we've also learnt so much! A couple of sessions involved us working with The Multi-Story Orchestra hearing from different musicians describing their instruments, they then lead us through workshops on how to create a piece of music which we did as a group online together. These kinds of experiences would have been difficult for us to access in 'normal' times due to travel etc but they would be impossible at the moment, because of the pandemic. Being able to meet as a group virtually and take part in these sessions is educational and fun but also social and it is lovey to see the other children and their families enjoy the music as much as us.
Being able to connect with other families taking part in music therapy has been a lifeline. During lockdown, the music therapy sessions with Demelza really helped tackle the feeling of isolation as we were connected as a group. As a family we were told by doctors to shield our daughter for the for the first seven months and we had no respite, no therapy and no school. We did this whilst juggling home learning and both having to continue working from home as neither of our jobs qualified for furlough. Moments like the music therapy sessions offered much needed relief and focus points to look forward to. Demelza has always been there to help families like ours in times of need, and lockdown was no exception. Moving therapy services to online, meant that families could still access their fun but in the safety of their own homes. I can't tell you how vital this was for all of us, as it felt like society had forgotten families like ours whereas Demelza staff celebrated them.
When people hear that we are a 'Demelza family' they are often shocked and saddened as they just think of a children's hospice as a place of end of life care. That is an essential and important part of what Demelza does, but it's only a part of what they do and the rest of their work and activity is very much about enjoying life and bringing happiness and laughter to families. We feel privileged to be part of this group and so lucky to be members of Victoria's Saturday Music club!”
Sam, mum to Lucy