A father’s fear – living with cerebral palsy

Life with my wonderful son Matthew James Mawuli Dyer, affectionately known as MJ, is a true test of patience and faith.

Unfortunately, MJ was diagnosed with Cerebral Palsy when he was six months old. The condition affects all four of his limbs, so life for MJ is a constant struggle and frustration. Tasks which other two year olds find easy and don’t give a second’s thought to are impossible for Matthew to achieve. He is, for example, unable to sit up, crawl or play with toys – all of which can be deeply depressing for myself and my inspirational partner and his loving mother, Melanie, who organises our response to his needs.

When we had an inkling that MJ was failing to meet his developmental milestones, I trawled the internet to see if there were other babies with similar problems. Eventually, I came across a video on YouTube of a boy of similar age to Matthew, and as I watched this little boy struggling to lift his head off the ground or even move his limbs I was overcome with a wave of great sadness and fear. I was looking at Matthew!

I called on my partner Melanie and asked her to watch it with me. The same emotions which had previously gripped me could be seen etched on her face, exclaiming, ‘Oh my god, Matthew has Cerebral Palsy’. We held each other and began to cry.

Nothing prepares you for news like that. All the hopes and dreams you have as a parent obliterated in one five minute YouTube video.

Initially, it’s the fear that grips you. The realisation that you are going to be looking after your son for the rest of his life is overwhelming. Some of you reading this might say, ‘that’s the same for every parent’, but not every parent is going to be helping their adult son when he is on the toilet, or of having to get up in the middle of the night to help turn over a fully-grown son because he can’t do it for himself.

This type of fear can’t be explained. You need to live it before you can truly understand. I don’t want you to think I am being selfish or that I am looking for sympathy from this blog- far from it. I just want to make people aware of the type of feelings parents with disabled children have; and to those in a similar situation to our own I want to tell you it’s OK to share how you truly feel. It does not make you a bad parent. There are some days I wish I could go back in time, and have the care-free life I used to have, but when I think of Matthew I realise my life is much happier and rewarding for having him in it. The love that I feel for him is so big my heart could explode – but I must say there are days I struggle to cope and hide this from my family. This blog is my way of sharing my feelings.

MJ has unbelievable determination and strength of character (he certainly knows his own mind) coupled with a positive and happy persona, which makes him a real character.

The last two years have been the most enjoyable, rewarding, emotionally draining and depressing of my thirty years on planet earth. I wanted to start this blog as a way of venting my frustration and sharing with anyone who is interested in the struggle and the joy of looking after a severely disabled child.