My sons conception took me by surprise, as did his birth. He did not take in life-giving air for 14 minutes. He lay on the floor in front of me: not breathing, not alive as he had been inside me, not moving.
I felt calm and dispassionate. I knew that something was wrong, but I was unable to panic. I had given birth to a whole, beautiful little person. The energy of nature had been released. He was my son and I could feel that energy around him linking us like an umbilical cord. Not one of flesh and blood like the cord that still connected us, the one that seemed only to have served as a noose instead of a lifeline. This was a line of history, of uncut future and profound love. Who knew what potential love might reveal.
Now I struggle with living day to day with my child and his disability. I try to keep his future out of my thoughts; a future without us. The world is not kind to people who cant speak for themselves. How will Dylan live when we do not?
As Dylan gets older, I feel more fatigue, grief and anger. I feel burdened by the needs of others, dead to feelings of love and less able to move under the weight of this life. I mean my life; not Dylans. With every additional weighted feeling there comes more fatigue, less functionality and less ability to help my son. He needs so much help with therapy and becoming independent; help learning to move and communicate, so he can speak up for himself and live life in the way he chooses. There is so much to do. How much energy do I have and how much time?
Every day I see Dylans world through my eyes. My eyes often see much pain and sadness in the world and I cant help but paint that onto his world. It is too much for him to carry this view. He is bright, funny and intelligent. He loves life. He loves people. He loves me.
He loves me.
What more does a person need than to be able to love and to be loved? In some unknown cavern within me, there is a feeling of change, of possibility. Like flowing water wearing away at my old conceptions of the world, this feeling slowly carves a new way forward where it is possible to see love in the world again, where it is possible to feel love again and possible to give love again.
I begin to face the reality of acceptance. It is not an acceptance of my sons disability. I am not sure if that is completely possible, but I was a nurse once, practical and experienced, so I knew what might lie ahead for us when Dylan was born. I speak of an acceptance of life and the manner in which I choose to be here.
No matter what therapies we try, no matter the level of skill and expertise gained, if all I ever do for my son is love him wholeheartedly, joyfully accepting his love of me, then perhaps I will have prepared him in the best way possible to move forward in life. With or without us.
This article was first published in the 12th-26th March 2010 (350th) edition of The Big Issue.