I had to give up my career as a nurse when Jack started having really bad seizures. I would be sitting in the back of an ambulance emailing my boss and realised I could not carry on like that, I had to give up work and put my family first.
It was hard to leave nursing because your job is such a huge part of your life, part of your identity, but there was no way I could carry on. I was a single mum struggling to cope alone with Jack and his sister Evie.
My mum has Parkinson’s and dementia so is physically and mentally unable to help me - before her illness she would have been my rock.
Jack has cerebral palsy and has always had seizures every couple of weeks, but he started having one a week and the seizures were lasting longer and longer, it was so frightening. I began bracing myself for the next big seizure – they were like marathons, each one could go on for up to four hours and only really strong medication –that would knock him out – could stop them.
Sometimes things got so bad I needed to get Jack to hospital in the middle of the night. I would have to wake up Evie, get her out of bed and take her to the neighbour’s.
Evie would go downstairs and open the door ready for the ambulance. It felt awful to think that had become a normal part of life for her. I was really worried about the effect all this was having on her.
She is such an accommodating child, she doesn’t make a fuss, she just carries on and never says anything about what’s going on, or how she is feeling. Sometimes when things have been tough she will ask for a cuddle and you realise just how much this is impacting on her.
I asked for help but just kept getting turned down and then a social worker said I should try Julia’s House. I hadn’t heard about Julia’s House before but when I did I was so excited. It was absolutely everything we needed, so I decided to refer Jack myself.
Our first session was in December on a Monday evening at our home. A Julia’s House nurse and carer came to be with Jack so that I could take Evie to a theatre club.
Evie has missed out on so much, to be able to go somewhere with her mum seems such a little tiny everyday thing that other people take for granted, but it meant the world to Evie.
We haven’t been with the service long but I already feel really supported.
When you have a child like Jack it is hard to find anyone who will look after him – even for a little while. No-one will babysit once I have told them: “If Jack as a seizure you need to give him these meds within three minutes and again 10 minutes later. You need to call an ambulance immediately because if it’s really severe he could die.” Not surprisingly people are too scared and back off, they don’t want the responsibility.
It is such a relief to have the support of nurses and carers who are not fazed by anything. Jack is in capable hands, in the hands of people who know what to do if there is an emergency and can stay calm.
But it isn’t just medical help – Jack has such a wonderful time with nurse Jess, he adores her. He loves driving the cars at the hospice and floor play. He never stops smiling when he’s at Julia’s House.
I took Evie along to a siblings event – a miniature zoo came to the hospice which I knew she would enjoy – but she was so nervous and shy I wondered whether she would be ok and was a bit anxious about leaving her.
When I came back to pick her up she was a different child – she was charging around shouting “I’ve made a friend!” She had met another little girl and they had instantly clicked and started chatting away – it was just fantastic.
We’ve all three of us felt the benefit of Julia’s House. I had a complementary therapy session, a massage, at home and it was amazing. You don’t realise how stressed you are until you get the chance to truly relax.
It is just really nice having someone be nice to you, to know that people really care about you, care about all of us, not just Jack. It is lovely knowing I am not by myself anymore.
I tried my best to cope by myself, but Julia’s house has enabled me to share some of the weight of responsibility of caring for Jack.
I could not go back to how life was. Before Julia’s House there was just a void. It feels so wonderful to have the help we so desperately needed; it feels like the beginning of everything.
We feel surrounded by love. We have no family to help us but we have Julia’s House – they are our family now.