ED Davey has spoken of the fear he has over who will love and hold his disabled son when he is no longer around. Now Sam Carlisle – mum to 22-year-old Elvi – tell of her similar worries. IT was the walk that pricked my tears.
Lib Dem leader Ed Davey gently held his disabled son’s hands and guided him into their family kitchen for breakfast, the two beaming into each other’s faces. That was a walk we do every day with my daughter Elvi, 22. She can’t weight bear without support, so either she bum shuffles around the house or we have to hold her upright, gently guiding her.
The tears came watching the Lib Dems ’ incredibly personal new film of Davey and his son John because you don’t see families like ours very often on the telly. To witness a former minister choosing to share his caring role publicly gave me an enormous sense of relief. At last an MP was talking about the hidden work five million unpaid carers do day in, day out, and the support they desperately need.
Like John, 16, my Elvi has a rare genetic condition and learning disabilities and will need 24/7 support for life. As with John, Elvi needs dressing, showering, personal care and lifting in and out of her wheelchair. Sometimes Elvi can manage on three hours sleep a night and expects me to do the same.
That’s exhausting but I prop myself up on the sofa, fuelled by love and strong coffee, while she binges Christmas carols on YouTube , even in June. She can’t change TV channels, though she demands t.
