My son Joey is 7 and has medicine resistant epilepsy which is controlled by a VNS (a pace maker for the brain) he has had a fundoplication to protect him from aspiration, is peg fed as he can’t swallow safely and is on anti-epilepsy medicines and movement disorder medications. He has cortical visual impairment and severe global development delay. Joey has an unknown condition that is life limited.
Up until last year Joey had overnight care and had a direct payments package – now despite his serious condition he has no support from social or from continuing care. His condition is still the same but the health board changed and despite having a life limited condition and medicine resistant epilepsy (he has been on over a dozen anti-epileptic medicines in his life has never walked, talked or being able to do anything for himself), care was wiped away, nothing not even one night a week.
I have shared care and have had many battles to have my son in my life – this is still one of them.
Juggling a full time job and then caring for Joey overnight when he is with me is incredibly tough and Joey also doesn’t have access to his disability living allowance when is with this side of the family either. I try to sleep next to him on a put up bed when he is with me and monitor his heart rate with a pulseguard which alerts me to seizure activity so I can be treating him as soon as I can. His condition is constantly changing and he is need of a respiratory study now to see why he is often gasping for breath at night. As you can imagine my sleep is deprived massively so I function on little sleep as I have to be on high alert.
Joey nearly passed away twice early in his life and his condition was so bad great Ormond street said to palliative care him and he wouldn’t be with us very long. There was no cure, no magic formula, he was the unknown, no-one like him in the world and they just gave up on him. But his neurologist in South wales didn’t give up he said one last roll of the dice and he got sign off for the vagal nerve stimulator to be fitted.
That was when he was just 3 years old, he is now 7 he has started to babble, bash things and is a cheeky little chap. Unfortunately he can’t do anything for himself and requires 24/7 care. His seizures are mainly controlled by a VNS and despite having between 50-100 seizures a day – mainly ones you can’t see his quality of life has improved, he is so much more aware and interactive with the world…
Despite the challenges there are huge positives, a wonderful community, my friends, my wife (Joey’s step mum), my whole family, my workplace, my hospice dad mates they all love Joey and go the extra mile to make sure he doesn’t miss out, despite all the odds against him and the odds against shared care.
Dads just aren’t recognised in the system and separated dads have to fight every step of the way.
Joey gets no financial support from his disability living allowance so my friends and family fundraise to make sure he doesn’t miss out. It is important to reach out and share your feelings and gain support. I am part of a lads and dads mental health support group whom have supported raising money for Ty Hafan and are also just a message away from listening and supporting me when times are tough. What keeps me going is the smile on my son’s face when he sees me and the impact my son (against all odds) has on everyone who meets him. He is my hero.
Good people step up massively in your life, I have been in touch with people who I lost contact with from school because they want to help my son have the best life. Get support emotionally if you can, it took me awhile but it has helped me open up and try and deal with the situation. I still get down days but who wouldn’t.
I have had to grieve for what my son could have been but celebrate who he is, an amazing boy “Joey the superboy”. I keep a Facebook page where I capture memories for all of the family and support network because you just never know when the last memory could be. I love Joey with all my heart and whatever it takes I will make sure he has the best possible life.