‘Why don’t you work more hours?’ I was asked recently during one of my part-time evening shifts. ‘This isn’t work; I could show you what real work looks like!’
Hello, my name is Rachel and I am proud to be a carer and a volunteer at Carers Leeds.
My son Oliver was born in 2000, it was the new millennium and I was loving being a new Mum. When Oliver was 9 weeks old he was diagnosed blind and at that point we were sucked into a system that no new parent should have to experience: endless hospital appointments, horrible invasive tests and many different therapists/workers coming to our home. Finally at 2 years old Oliver was diagnosed with a rare genetic disorder called Gillespie Syndrome, so rare that the only similar case I could find was in Sweden. We were told he would never sit unaided, walk or talk, then we had to somehow leave that room and continue life with that news hanging over us.
Those first 2 years I felt we didn’t belong anywhere; my friends with similar aged babies had passed us by at a hundred miles an hour, yet I was also not ready to attend a group for disabled families. My family was great but they were hurting too.
Eventually I did find support by forming friendships with Mums who were going through the same weird life with a disabled child as I was. We propped each other up with tears, laughter and loads of cake (you know who you are!)
Life has been challenging and totally not what I had planned, I was unable to go back to my previous career. All my time and energy was caring for all Oliver’s needs. He later developed epilepsy and continued with many hospital visits. I found I was becoming increasingly isolated and I missed going out to work.
I discovered Carers Leeds through the lovely CEO Val and began doing some voluntary reception work and more recently some admin work. I joined the Carers Leeds book club which I love and meet up with other carers, all with a different story, but many things in common.
I love that Carers Leeds have our backs and support us to do the most difficult job in the world. I think that we carers are amazing and next time someone asks what I do for a job I will say I am a Nurse/personal dresser/cook/ cleaner/ toothbrusher/manicurist/hairdresser/weightlifter!/employer of PAs/secretary/disabled rights campaigner/benefits expert/form filler in/interpreter of medical jargon/Makaton signer/teletubbie expert/Mario Kart ace!
……… and that’s just one day!
Keep going all you carers!!
As for Oliver, he’s doing great, he can walk with splints and a walking frame, he can sit unaided. The talking never came but he communicates brilliantly through signs and pictures and I am so very proud of him.