On edge

That's me. Always on edge, worried about what James is going to do next and how I'm going to manage. But also, I'm on the edge of James - sometimes I feel so close to him, as if he's invited me to enter his world and really connect with him but so often I'm not allowed quite close enough. As if I am watching through glass, disconnected from reality and distant. Perhaps that's how he feels? The more I try and get through to him the more moments we share with laughter and connection but they're only fleeting and it breaks my heart more than I ever imagined possible. Sometimes I wonder if it would be easier if he was totally disengaged from me, because I wouldn't set myself up to fall down again. And when I fall, I fall hard. My spirit feels broken, my whole reason for being drains from me and I can hardly pick myself up. I have never dealt with rejection very well, and to experience it at this intensity and frequency takes its toll. When I watch James pushing me roughly aside, screaming "no!" forcefully, as I try and offer him a cup of water when he is coughing and crying at night, I just wish I knew what to do, how to handle it, how to stop myself crying and feeling like I am failing him. I wish that autism had never reared its head, and at the same time I find myself wishing that we hadn't seen so much "normality" in James. This time two years ago he was no different from his peers - we enjoyed reading books, singing nursery rhymes and making biscuits together. I was full of thoughts of his future and our future as a family. Fast forward two years and I'm still full of thoughts of his future and our future as a family but those thoughts are no longer full of anticipation, hope and aspirations. Instaed I am full of fear, uncertainty, worry, sadness and grief. For in many ways we have "lost" our son. I don't recognise him in videos or pictures - they are like the memories of long lost relatives, stored to help us remember. I watch them with tears running down my face, just as a mother would mourn her child. Only I still have James. He is still here, he still needs me more than anyone has ever needed me and I sit here, on the edge, wating for the next time he invites me to leave the edge and enter his world.