Beautiful. It’s the word that now enters my head when asked to describe my son. And it's theft. Out and out theft. If you have read the first post on this blog you will know why.
It’s because I had to get taught a lesson by someone far wiser than me. Because for a long time, when asked about my son, I would answer with his disabilities. I don’t really know why. I mean without a diagnosis, he’s not exactly easy to define. So why was I so keen to force definitions upon a boy so full of personality? I guess because it was a ‘get it out of the way’ notion. Help people to understand.
It was misguided. Because actually, the vast majority of people want to understand who my son is. Not how disabled he is. And it is my job to tell them.
Parenting website Mumsnet has recently launched a campaign called ‘This Is My Child’. It is aimed to overcome the myths around children with additional needs and to raise awareness of the issues affecting families. As part of this, they are linking bloggers together, allowing them to say a little about their child. Now I do love a good blog hop. So here goes. A little about this boy of mine.
This boy is brave. In his two years he has faced more pain and medical tests than most see in a lifetime. He faces a chaotic, shrill and confusing world each and every day. But when the tears have stopped falling, two glassy wet eyes soon turn upwards. With the simplest of songs, or the gentlest of tickles, the smile creeps determinedly across his face. He isn’t overcome by fear of the next episode of pain or sensory overload. He falls into my arms not in despair, but in fits of rapturous giggles.
This boy is patient. He allows my clumsy attempts to put him into yet another physiotherapy position. My efforts to drag him through endless rounds of sensory therapy. His world does not centre on play like most two year olds. He lets me know of his displeasure, oh yes, he knows his own mind. But he lets me try. And in doing so, he is trying too. Fighting desperately against the muscles that will not obey; those muscles that often move without command. But he does not let the frustration consume him.
This boy is loving. He wraps his arms tightly around me without motive or any hint of manipulation. He shows his affection constantly. His wails are prompted by distance, a need to be close. They are not because he is naughty, or demanding. You may say clingy. I see loving.
This boy is forgiving. He does not punish my mistakes or penalise me when I cannot understand what he wants. When I franticly ask questions that he does not understand. He does not throw himself to the ground, or deny me his love. He lets me try again. And allows me to fail again. Until finally, I am the one who learns.
This boy is resilient. He greets every day with a smile. Despite all the pain. Despite the frustration. Even at such a young age, there must be a temptation to give in to the challenges. To stop laughing the day away. To be overcome by the hardships. He does not. His world remains defiantly happy.
This boy does all of these things so much better than I ever could. Yet he is called less able.
This boy is mine. And I am so lucky to say that about a brave, patient, loving, forgiving, resilient boy. My boy.
This is my child.
This is my child.