I may as well start as I mean to carry on, and without honesty I will be doing no one any favours. That stab of pain in the heart, that feeling of having your insides ripped out when you find out that your child has a disease that is incurable, with symptoms that can only get worse, that pain never goes away, or hasn’t yet. Don’t get me wrong, you may not find yourself curled up in a ball of pain, or plotting some cunning way of ending it all for you whole family three years down the line, but the pain is still there. You just deal with it differently.
I felt that my life had effectively come to an end. I had dreams for my family. We had high hopes. You know the ones, famous football players, rugby players, airline pilots, whatever. I just hadn’t included a disabled, wheelchair bound son in the equation. I knew that I had been pretty naughty at times as a child, and even a young adult, but I was sorry. This was no way to make me understand. Yeah, I had got the picture, but this was serious. Someone else shouldn’t be paying for my faults; that just wasn’t fair. Or maybe it was. After all, seeing someone you love from the depths of your heart degenerate before your very eyes is pretty effective punishment. Or maybe there is no such thing as fairness. Fairness is a pretty human concept. It doesn’t really make sense when you think about it.
So, fairly screwed up, I faced the future. I faced the future with a large white plastic grin. I was looking ahead with my eyes tightly shut. This may not have been the perfect way of dealing with it but at least my head was pointing in the right direction.
I am tall; I had always been tall; I was tall at junior school. I had spent my life looking over other people’s heads. I loved being tall. My feet were a long way from my head, and always had been. Tall people had an advantage, somehow. He would not be tall. He looked up to me and probably would forever. I just hoped that he would manage to look up to me metaphorically as well as physically for a long time to come.
I started to see small people everywhere. I started to see small people in town and on the television. I started to see people with all manner of disabilities. It isn’t that I hadn’t really seen them before, just that I hadn’t really thought about them much. I had never thought about them much because their disability didn’t really impact upon me. Now I couldn’t think about them because disability did impact upon me and I wasn’t sure how I was going to cope.
Still, facing the future with a brave face I knew that we would all have to cope. Him, me, my wife, and his younger brother. We would all help each other come through this. Come through this, what was I thinking. There will be no ‘coming through this’. This is the way it will be. This is the way it will be until he dies. And by that time we will be gone ourselves. I had only just got used to having children and now I was thinking about the end of theirs and our lives. What sort of disease was this? I wasn’t coping particularly well.
I made an effort to avoid contact with support groups. Support groups were for people that needed support and I certainly didn’t. I was facing up to things and planning for the future. I was being sensible and logical. I was being sensible, logical and miserable. I didn’t feel sorry for myself, nor did I once think ‘why me?’ so therefore I was coping. I flew a banner that stated that ‘his attitude to the disease would be a reflection of mine’, so I made sure that my attitude was positive. On the outside I was positive. On the inside I was contorted with grief.
He grew. He didn’t grow very quickly but he grew. He carried on walking. He didn’t walk very quickly but he walked. He played football, swam, canoed and rode his bike. He talked, and my word he talked. I never expected so many questions. His wit and intelligence amazed me. His reaction to his, now obvious, set of disabilities made me burn with pride. I had never figured that he would appear to be facing his ‘problem’ so positively. I was also acutely aware that my grief was based on how I imagined he would feel about this disease, and in reality there was no way that I could foresee how he would feel. With him feeling positive we could all feel positive.
I plucked up courage and decided to attend the Conference. Yes, we had heard of the Conference and even seen the photographs, but had never wanted to go. I really didn’t want him to see how things might turn out. I didn’t want to see how things might turn out. I did, however, want to hear how research into the control of the disease was progressing.
We went.
We met other people with the same disease; we met people with all manner of diseases. We met parents and carers. We met specialists. In speaking to people we found support. I found support, and only then realised that we had always needed it. Not in any cathartic way, just to know that we weren’t alone. And we weren’t. We found hope. We found inspiration. We met people that were devoting their lives to the cure and management of all sorts of diseases.
I met short people and I met very short people. I wondered just how short a person could be. I talked to people with disabilities. I drank with people with disabilities. I realised that we all have disabilities. My disabilities may not be physical, but I sure have them. For me to ever assume that physical stature had any bearing on anything at all was ludicrous. How many times have I let preconceptions creep into my thoughts and actions? I will never know. I do know, however, that I my inability to see the person beyond the body has been a disability. If I was tall I was surrounded by giants.
Our son has a disease. That’s the way it is. A disease that at the moment is incurable. We are a family. We are not your usual family. One of our three boys has Morquio’s disease. Our son knows that he has Morquio’s disease. We will never know how he really feels about this disease deep down inside. He probably really hates it. I hate it. There is nothing that we can do about it so we mustn’t let it eat us up. We can, however, learn to live with it. It is not always negative.
To quote from ‘The Prophet’ by Kahlil Gibran:
And a woman spoke, saying Tell us of Pain.
And he said:
Your pain is the breaking of the shell that encloses your understanding.
Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.
And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;
And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.
We have all come to know Morquio’s disease, but none more closely than our son. He amazes me and I love him deeply. I will always look up to him.
