‘The bond’, without doubt, was the topic I most enjoyed hearing about from parents. I loved hearing the stories of togetherness, friendship, and the joys that fatherhood brought.
Every parent spoke about it. I have met other families and witnessed first-hand the connection, the unbreakable togetherness, the invisible thread which linked these families, creating an unbreakable pact.
In hindsight, perhaps these families were not telling me the whole truth. Perhaps, as is often the case, when I spoke to other mums and dads they were painting their own fantasies and dreams of family life, but I was an eager father to be, hoovering up the fantasy wherever I could find it, my mind’s eye in overdrive. Maybe this was a somewhat romantic notation of ‘ family’. Maybe I let the ideal cloud my judgement, but that is truly how I imagined myself, Melanie, and MJ would be: all three of us together, with MJ at the centre, filling us with joy and happiness as we grew together as a young family taking on the world.
As we blissfully journeyed through Melanie’s pregnancy dreaming of the future and the utopian fantasy I had created in my head, not for one minute thinking anything catastrophic would happened to our unborn child I would listen gleefully to parents describing ‘the bond’ they had with their children, and how nothing prepares you for that kind of love and closeness you have for your child- “it’s instant”, they would say.
The utopia I had created in my mind was soon to be replaced with a dystopia – “what the hell were all those parents talking about, have we given birth to Damien?” I said despairingly towards Mel during one of MJs many screaming fits, or, as I christened them, “atomic super cry” – the whole street took cover when he began one of these fits – thank god they’ve passed!
Interlude – I must stress at this point that both myself and Melanie now have a very close connection with MJ, and although it might not be the same as parents with normal toddlers it’s still a special connection which we have both had to work bloody hard to forge.
When MJ was born we were both obviously overjoyed. MJ was whisked to the neo-natal word for four days after Melanie’s emergency C-section. I could tell this was tough for her but as always she put on a brave face. She would not see MJ for a couple of days. MJ was stuck in an incubator for three of the four days he was in neo-natal. I was desperate to pick him up and start the bonding process, but that was not possible, and I believe affected my relationship with him.
It was strange how I felt about MJ in the months after we left the hospital. Obviously I loved him and wanted to protect him, but I did not feel close to him. What an awful person I must be not to have that bond I had been so looking forward to. Looking back I think I might have had a form of post natal depression!
If you are reading this thinking ‘my God this guy is full of self-loathing he needs to snap out of it’, you would be right, I did loathe myself and maybe even felt sorry for myself and the situation that had been created by MJ’s arrival into our lives. I was not proud of the way I was feeling or the person I was becoming, but please try to understand what I was going through and put yourself in my shoes. This was a life changing event, seismic!
Due to his CP he was constantly crying, never settled, if we put him down he would cry, if we moved a millimetre he would cry. I was slowly starting to resent him and hating myself because of it. ‘How can I resent my own baby?’, I would ask myself. As always with the way I deal with issues I internalised my feelings, repressed them, and got on with it. ‘Nobody needs to deal with your issues, Luke, get on with it!’ So I put on an act for family and friends while the sadness spread throughout my body like a sickness.
The bond that all these families had talked about was a myth to me, a joke. Instead of the utopia I had dreamed about I was now living in a nightmare which had no ending or hope – truly miserable is how I would describe my state during this time.
Obviously, the issues MJ was going through were far greater than I ever envisaged or was aware of. Perhaps if we had known from birth it would have been easier to handle. We would have had an explanation why he would not engage with us, a reason why he was not smiling, a reason why he had a complete lack of interest in toys, or anything, for that matter. I would often find myself staring at MJ and wonder where he was, what space was he in. Looking back he looked like a prisoner in his own body. All the tears and screams where borne of frustration and desperation. How I wished I could have helped him more during the first few months.
This feeling continued for more than six months. I cannot speak for Melanie and that’s not the purpose of this blog. I believe, however, she was probably feeling as low as I was if not more so as she had carried the wee man and felt him moving inside of her. I can’t image how she must have felt having to go to mother and baby sessions with the screaming firecracker we had created, but attend she did. Melanie’s mental toughness is a credit to her and one of the reasons I love her.
The biggest turning point in our relationship came when I realised how much MJ loved music – we had something in common, FINALLY a breakthrough!
Music has lit up MJ’s brain. Barriers that once stood have been breached and cast aside.
His beautiful smile and his hearty belly laugh have started to become more frequent. Eye contact has improved. Finally ‘the bond’ between father and son had begun to blossom. The gloom that had been hovering over me had passed and the resentment disappeared. I could begin to like myself again and start loving MJ the way a father should.
Sometimes a bond takes longer than an instant to forge, and I like to think these types of bonds which are forged with difficulty over time will more securely stand the test of time than those more carelessly made.
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.