When you are born with a disability it’s pretty devastating for your parents. They have to learn to accept what has happened to their child and try and move on. This is the situation that my parents found themselves facing on August 12 1960.
Like all parents, they wanted to see a son or daughter arrive healthy. They then had to cope with the knowledge that I had been born with a condition described as a congenital malformation. Namely Spina Bifida.
As I have described in an earlier post, it’s where the spinal cord doesn’t come together as it should in the womb and in the gap created a cyst grows. In order to seal the damaged spinal cord surgery is carried out and the cyst removed. By removing the cyst damage is done to nerves which can then affect both or a single lower limb or in rarer cases no lower limb damage allowing the person to walk .
There can also be nerve damage affecting the bladder and bowel or even both. Alongside this many of those with this condition have the added complication of fluid in the cavity between skull and brain called hydrocephalus. Surgery was used in my case to insert a valve to drain the fluid and reduce swelling and risk of brain damage.
Today, through the research carried out in Belgium and other centres including Cincinnati, which was involved in the 60s too, ground breaking surgery can be carried out within the womb. It is now possible to correct this spinal cord defect leading to a child who was diagnosed with Spina Bida following scans being born with reduced symptoms.
It’s bizarre to think that my wife Shan and I met because we were both with this condition. We may not have done so if we were born today with medical advances and changes in education provision for children with disabilities. I find it hard to believe with my Christian faith that the God I believe created me in his image would want me not to have met my soulmate.
A combination of nature and genetics have caused this to happen and when a child like me was born it was a matter of it being nurtured in the correct way in order for him or her to thrive despite what genetics had created as an obstacle.
I was so lucky to have a Mum who was a trained orthopedic nurse. She did so around the time leading up to the second World War. She therefore had the skill set that allowed her to be taught more by the nursing staff at Alder Hey hospital about the way to keep my recovery going once I returned home to Efailnewydd than if she didn’t have a nursing background.
They taught her signs to look for after my valve was inserted into my skull in case of blockages. A problem that led to illness in fellow pupils at Ysgol Gogarth and on rare occasions death. Thankfully, my pressure dropped in the early months and it became dormant.
Mum has definitely given me a number of her passions. We share a love of music. Although she allowed me a way into the world of Opera and classical music which has seen me love piano and orchestral pieces by Rachmaninov among others.
I have been a viewer of the Proms since a small boy and watch still in my Mum’s memory. She would have loved the extended radio and TV coverage the BBC gives the festival these days. She also loved Cardiff Singer of the World. She was so excited when Bryn Terfel came so close to winning it. Although I was unable to get her to accept my love of pop, rock and blues music.
Alongside a nursing Mum I had a Dad who had a Christian faith to lean on as I was making my way through my recovery after my time in Alder Hey. He too, as the years went by, was able to nurture in me a similar faith. As the child of the Manse experts say you either do have a strong faith or none at all. Thankfully I fall into the first category.
He also gave me a love of cricket. When I was a young lad I became obsessed with the England and Yorkshire batsman Geoff Boycott. Dad had become a cricket fan during his years as a minister in Manchester. He and my Mum would spend a day in a Test Match at Old Trafford every time they took place until they left the city. Whenever they went my Dad’s land lady, Mrs Dubrovsky, would ask in her strong Polish accent,’You going to crackers’. (Cricket).
Through her nursing friends in Manchester she got the occasional ticket to Old Trafford. She wasn’t a fan so passed them on to Dad. He also had a friend in the police force who would go with him, he too was a member of a Welsh chapel and the cities Welsh community. They got tickets to United v Cardiff in the late 50s. They were standing in the United end and when Cardiff scored their Welsh patriotism got the better of them and someone shouted, ‘You support them Taff!’ It wouldn’t happen today.
You will not be surprised that I have supported United since 1967 and won’t stop now. Even though I watch out for the Wolves scores too. The games between the two teams are hard to watch. For mine and my Stepdaughter’s sake I hope for a draw.
Dad taught me to have pride in my country, it’s language and it’s culture. I have been to the National Eisteddfod many times over the years. In 2021 it will be in Boduan outside Pwllheli where Dad’s family roots are and where my life journey had it’s first three years. Going there then will be a very emotional experience.
I am not a singer since my voice broke over night before the school Eisteddfod. And so have not completed in the National Eisteddfod. Mum did once as a Mezzo in Llanrwst.
Dad wrote Welsh poems and had a hymn added to an edition of the hymn book of the Presbyterian Church of Wales. Uncle Willie wrote poems in a way individual to the Welsh language called ‘Cynghanedd’. It’s this that the Chair is competed for at the Eisteddfod annually. When Dad died back in 1995 we as a family sent money to the Eisteddfod so that one of the literary prizes that year was in his memory. It was an emotional day when it was given out.
As you can hopefully see, nature does have an affect on whoever we are whether we are disabled or able bodied. As time moves on the way we are nurtured by our families and the groups and organizations we are members of have a far bigger role in our lives though.
Those who knew both me and my Father and Uncle would tell you we look very alike. Bizarrely Dad couldn’t grow a beard to save his life and both my Uncle Willie and I could grow one in a fortnight. So, when bearded I am the spit of Uncle Willie and clean shaven, my Dad.
One thing that is harder to understand is how ancestors we have little or no knowledge of can be seen in us. My Taid (Grandad) Williams had a slate miners dry wit. His sarcasm is something my Mum and her Sister Edna said I had been given in spades. The debate will go on. My upbringing following my genetic makeup given to me by God made me the person I am today.
The nuturing by teachers, nurses, doctors, friends and family plus my nation’s language and culture has made me the man I am but when the person you looked up to most of all led the church he worked for on behalf of the whole of Wales for three years you feel unworthy. Dad was a special man but he was supported through everything by my Mum. A quiet and unassuming woman. I am proud to be their only child but sad that I didn’t carry on our branch of the Griffith family line. Although, I treat my Stepdaughter Kate as if she was my flesh and blood and feel strongly that families are built on more than DNA.
Huws Hideout 