In my last blog I talked about how people step up when times get tough and how others unfortunately fall by the wayside. I love the quote from Michelle Obama “when they go low, we go high” – I call this blog the next junction as for many years I've had to motivate myself every day to get through the tough challenges that were faced by my son and my family.
Whether that would be going to work or heading to the next multi-disciplinary meeting and have more support withdrawn. Can you believe a senior nurse not understanding my son’s condition saying, “It’s just epilepsy”. Epilepsy so severe my son can’t do anything for himself, epilepsy that has robbed him of any sort of normal life. That nurse who looks after the care team really didn’t get the turmoil in our lives and the unknown future we have. Another senior member of that team also asked can Joey call out for help in the night… my son can’t talk by the way or communicate for help!
This is what happens when health boards change and don’t understand complex needs.
I would speak to my bosses in work who would look on in horror as the world that I was part of was so far removed from normality. I would bounce from speaking to a customer to dealing with how do I get my son the right standing frame or the right equipment for the house. I would be met with the disbelief of my work colleagues who would say I don’t know how you do this, how is this right, why does this not get provided.
I can do this because of my wife, my family and friends. My wife Ceri (Joey’s step mum) has been an absolute rock through this, seeing me go through the battles for my son and literally picking me up off the floor when things just don’t go the way they should for him. It is a world that she has entered and despite being utterly shocked by what Joey and I go through she is there every step of the way.
As a parent who has a special needs child and one whom represents a non-verbal child you become their voice and no matter what, backs against the wall you fight for their every human right. No matter what is thrown at you, you dust yourself off and go again. The energy required is something I would never have thought possible. I often use the words “they didn’t teach this in school”.
I have a smile on my face when I say this because I just didn’t realise this world existed just 7 years ago and each and every one of you who fight for your children’s needs over your own. I have so much respect for you. What I would say to those who are feeling defeated, please keep going. Take a break from some of the battles and when you muster the strength go again but please do talk about it.
Despite having limited support from the disability social team and the agencies that hide behind red tape and bureaucracy I have recently found support from Bridgend carers who genuinely care about me and my blended family and I can’t thank Davina, Karen and Joanna enough for their emotional support in the past 12 months and looking out for us as a family. They care about what my daughter is going through, what my stepson and stepdaughter are going through and also provide emotional support for me and my wife. I have had counselling over the years to deal with life’s challenges and I am proud to say that this is ok, no one should make you feel like it isn’t.
If you need support then that’s absolutely fine. It’s ok not to be ok.
Recently the grocery aid charity has kindly given myself and my wife (Joey’s wonderful step mum Ceri) a break in Newquay camping for a few days. Far removed from New York where we would love to be but to have that support for a few nights break was lovely for us to re-charge from a difficult year. Despite the lack of recognition of what Joey’s needs are by social services and some health professionals there is a network of people out there that can help outside of these – please do remember that if you are in the same situation.
I reached out and wonderful people stepped in. I have had people climb mountains, run marathons, make blankets for raffles and other raise money through their companies charity because they want what’s best for Joey. Ty hafan the children’s hospice in Wales have also been a great support, what a wonderful place it is and staying there for one weekend a year is one of my highlights because the people there care for my son’s welfare.
My friend Markos Orphanides read my last blog and said what can I do to help - I know I’ll run an ultra-marathon to raise money for his day to day needs and he is doing it next month! Another friend Neil said I am here to help – let me see what my company can do. I have had friends raise money for my son’s ppod and a company called gallaghers help convert his room to be more disabled friendly.
I can only thank everyone who has helped me when my back has been against a wall. Liz, Drew, Polly, my whole family, Tree of Hope, Stuart, just everybody that has helped me there are so many more names I could mention over the years. Joey, myself and my family just say thank you from the bottom of our hearts. You give us light when sometimes it can seem so dark and remember the next junction could be hugely positive.