I cried every day for three months when I found out that Carmela had muscular dystrophy. My life simply ended at that point - I kept thinking why, why us? Play
Darren and I had fought for five years to have a child and now our precious little girl had this horrible muscle-wasting disease. We fought to have her and now we are going to have to fight to keep her.
I come across as being strong but inside I am frightened. There are so many ‘what ifs’ -
what if she doesn’t wake up tomorrow? Right now though, we have to make the most of this precious time because at some point in the future we are going to have a big hollow in our lives where our child used to be.
Carmela can still walk, although she gets tired easily. She wears a head guard to protect her from knocks and falls as she is very wobbly. Horse riding has made a big difference to her mobility - and that’s down to Julia’s House.
Carmela absolutely loves ponies so we started going to Riding for the Disabled, but there weren’t enough volunteers to help her ride regularly. Our occupational therapist suggested we get in touch with Julia’s House and I have to say it has been a total lifesaver. Carmela has two carers - amazing girls - who take her riding every week. Her core strength is so much better and this has really helped keep her on her feet.
Those carers are wonderful - it is so much more than just a job for them. It takes a very special person to work for Julia’s House and that comes over in everything they do. I could not leave Carmela with anyone else - I could not burden someone else with the worry.
When I mention Julia’s House her little face lights up. As well as the riding she loves going to the hospice. Although Carmela attends mainstream nursery she does not always like to play with the other children because she cannot keep up with them. At the hospice she is like everyone else, no-one notices the difference.
No amount of money can pay for what we get as a family from Julia’s House - the quality of care, the thoughtfulness and the friendships.
Anyone thinking of becoming a paediatric nurse of changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.
The first time the carers took Carmela riding I walked round with them, listening to her laughing and squealing with joy and. I just cried and cried, tears of happiness. You can’t put a price on that.