Humans are curious. it is one of the great qualities to that make humans human. But it is so great? What about when they stare at your disabled child? Over the years I have read and heard differing opinions and stories. Some heart wrenching, some slightly funny, some displaying a general lack of education and some just plain cruel.
Here's my thoughts... The most poigniant incident was when M was a baby. Soto syndrome can cause a devastating level of enamel dysplasia. (Enamel dysplasia is a condition that affects the normal levels of one's tooth enamel. A form of exceptionally hard tissue, enamel acts as a protective outer shell to cover the part of the tooth that contains the sensitive pulp, dentin and cementum tissues.) When M's baby teeth came through they were a greenish colour. No amount of brushing was going to make them white or magic up some enamel. While out with him I heard a little boy say to his mum "Mum that baby has got green teeth, Yuk!" Through ignorance or similar her response was "that's what happens when you eat too many sweets" I was cross. how dare she say that about my baby. My baby who struggled to take his feed orally, never mind be old enough to be weaned long enough for food to cause tooth decay. My baby who struggled daily to survive. Constant reflux adding to his oral problems. How dare she use my baby to make a point about sweets to her child? I don't know what reaction of hers would have been best or better. Certainly not one that made me feel like an inadequate mother. Through the years people have stared at M for his differing disabilities. One little boy who made me chuckle said "I want a wheelbarrow to ride in too" I distinctively remember his mum telling him "it is not a wheelbarrow, it is a wheelchair because the little boy has poorly legs." I liked that. No"shushing" him away, no reprimand causing negative associations, no awkwardness... just a plain sentence. The little boy paused for a moment, I suspect digesting the information, and then carried on looking at the world in wonder.
I could fill this blog with similar stories. As much as there is a need for education amongst society and how it sees "different" to their own ideas of conventional, I, went on a journey of discovery learning how to deal with staring. Because, lets face it, the journey has more urgent situations that need precious worrying energy. So below was something, some call it a mothers love letter, I wrote quite some time ago, to make sense of it. I hope it helps someone somehow..
Eyes Full Of Love
You know something? I was asked today about a couple of things that got me thinking. The grey matter in my head started sparking little currents of electricity and thoughts started running wild. I have something that I really want to share with you. Most of you are already aware that I do not, and never have, considered myself unlucky when I look at my child. He is very special and means the world to me!
I can almost hear you asking where this is leading. Well, have patience please – I’ll take you on a road of wonder. A road where not all things are as they seem. A road that some people will recognise, but most of the people in the world would disagree. A road that you may, I believe, already have some knowledge and memories of. The road is one that has been very well travelled by many, many people in the past and is still waiting for navigators of the future. A road that is seen differently by everyone. This story tells you of my travels down that road today aided by remembered journeys made over the last few months.
Some people look at M and see him through cloudy eyes that are filled with sad and disjointed views of normal and perfection. M, to me, is perfection! He is a child as any other, and was born for a reason. M has no preconceived ideas about the way people look at him. He has no idea about the difference between a good person and a bad person. He sees nothing but good in everyone and everything. He is a child so full of love and courage, determined to seek the good that is within him and find it everywhere he looks. Okay, M is a child with a disability. A disability that no-one could fail to notice – not a blind man, not a deaf man. But M is only disabled when compared to the average walking talking humanoid on earth. So he cannot and will not ever run? So what? That doesn’t take away his right to live a happy and peaceful life! So he cannot and will not ever eat? So what? That so called disability may just save his life. So he cannot and will not ever talk? Well, you are so wrong with that! M does speak – he just does not use his mouth! Look at M’s face – see how it lights up in the brightest “hello” you can see? M speaks with his face and his beautifully expressive eyes! M tells you he loves you – just look into his eyes – so full of love and joy – anybody and everybody can see it! The love M feels comes directly from his heart. You can see the love shining from his eyes whenever you look at him! M is happy to be here – and he wants everyone to know! All the people that know M love him. M has that ability – the ability to melt your heart with love and compassion. The ability to make you see past his obvious disability and see the courageous and determined child that only wants to be happy.
It is not M who has the disability; it is those who fail to see past their own eyes that have a very definite disability. For they have failed to see the joy and love that is there for the rest of the world to see. They cannot see that this little child is not ashamed or angry at what life has given him. They fail to see the innocent beauty of a child who is so wonderfully happy to be in this world of ours. They only see the wheelchair and what that wheelchair means in their much neglected minds. They cannot see that the wheelchair that would act as chains to them, is this little boy’s escape. The freedom that they take for granted is only given to M by the use of a wheelchair. But M sits proud and strong and does not see the looks of pity. He sees not that people see no further than his chair – and if he did see what they saw? He would smile wider – he would love harder. Why? Because M is a child with an advantage on us. M’s advantage is that he sees nothing but love and joy everywhere! Love and joy when others around him are seeing normal – plain, bog-standard normal. And all that comes with it.
I am lucky – very lucky! For I have a son who is loved by everyone who knows him and some who do not. M is lucky – very lucky! Probably far luckier than any of us. For he sees only the beauty in the world that surrounds him. A seagull making loud noises – that is a reason to smile for Michael. A tatty empty crisp packet? Rubbish to you and me? – Oh such joy does M find with that! Windy weather blowing every which way – for M that wind is like a strong breath of fresh air stroking his cheek. The rain that falls and means changes of plans to the day’s activities – you should see the sheer exhilaration on M’s face as the raindrops splash and tickle his face!
Someone asked me why he has to suffer so? How can I watch him perhaps daily or sometimes hourly struggle with pain? Sure, M feels pain. Such a tremendous amount of pain in one so young has been unbearable to watch. But M is still here fighting for what M believes in. He has had several opportunities to “opt” out of this life – but he has fought to stay here on earth with us. He will not give up – he has too much living to do. He is a strong determined little boy who will not give less than 100% to everything. Even when he is so very, very poorly he tries to show his happiness in life, by trying to smile and laugh – if he ends up crying it’s not because of the effort to be happy. M is a little boy whom I believe has been kissed by an angel – and he has the mark to show for it. He is nothing other than a blessing sent here for me to love, he is my little angel here on earth and nobody should pity him. Feel sad for him because he is struggling – yes. But not pity – because M doesn’t want or need your pity – all M wants is the chance to continue his unique, happy and loving life in this wonderful unique world of ours.
So now the journey comes to a pause. Junctions appear in all roads. They are the points at which the journey may change direction. I’d like to think that M’s journey will become pain free. But, perhaps, most importantly, I would like to see my little angel shine bright for now and evermore in the knowledge that the world can see him for what he really is:
M. T. H. – A superbly happy little boy. Bless you M Love you forever and beyond, Mum. xx
