I know Sophia can’t undertake any of the above activities without full support but the fact that she does them with full support is fantastic. She could hardly lift her head 6 months ago and now she can hold her head up for hours, how amazing is that! Her moments of recognition have increased as well. She definitely knows me, her granny and poppa and her brother by our voices, and is just starting to respond to her father. She’s started seeing and tracking her light-up toys and has taken incredibly well to eating a wide variety of foods and textures. She is starting to tentatively reach out to touch the items in her various touchy feely boxes and she is trying to sit up on her own.
All these activities keep me busy and it’s learning through structured play for Sophia. Everything we’ve been doing is absolutely crucial for her development and has to be fit in around her visits to her various support professionals and social groups, her brother’s activities and the piano lessons I give. And I have been feeling incredibly positive about Sophia’s development, very gentle as it is, she is absolutely flourishing. So if I’ve been feeling so incredibly positive, why then the sudden relapse into self pity and an all engulfing feeling of absolute futile ineptitude and sorrow? Why?
I was driving along our road with Sophia in her seat next to me, singing ‘Wind the Bobbin Up’ at the top of my voice. We were on our way to the monthly Sensory/Vision Group. It was a beautifully warm and sunny day with a gentle breeze and blue sky; birds singing in the trees; the river our road follows, sparkling in the sunlight. An absolutely perfect, Indian Summer’s day. A good-to-be-alive-day as my mum calls them. I was literally 300 metres from our home and I suddenly thought of the future – of my family’s future, of my son’s future, of my future and I’m right back to where I was when we first realised the full extent of my gorgeous girl’s disability. Only this time she’s an adult and I’m changing an adult’s nappy. I’m cleaning shit from an adult’s bottom and putting a nappy on it. The shit has dried and become stuck in her pubic hair because I’ve not been able to get her back to the car to clean her fast enough and there are no changing facilities for adults where I can rest her safely and with ease. There are disabled toilets but they don’t have high tables and you certainly can’t lie an adult down on the floor to change them in those.
And suddenly I am in floods of tears. Hot stinging tears that I can’t stop. I look at my beautiful, cutesy, gorgeous baby girl sitting next to me gazing at the bright sunlight, oblivious to my pain and I sob so hard I can hardly draw breath. I immediately pull to the side of the road and stop the car.
It’s as if my whole future has closed in on me and I’m suffocating. One second I’m changing an adult’s nappy and the next I’m staring out at glorious countryside, locked in a van at the side of the road, unable to escape, banging on the window, screaming to get out and into the fields and climb the hill in the distance, but I can’t because the paths don’t fit frigging wheelchairs and I’m stuck, always looking ‘out’ but never being ‘in’. I’d wanted to be the mum who took her children off mountain-biking and hiking every weekend in the summer; who learnt to surf with her children and taught them to ski and snowboard. I’d expected to be embarrassing mum dancing at a music festival; who dragged her children round art galleries and museums in the hopes of finding that one thing that would inspire their futures.
But now? Now my future is house-bound and locked into a world that revolves around access and funding, or lack-of, and the goodness of the few who try and help out. And god it’s bleak.
I turn the car round and we limp the 300 meters home whereupon I gently lift my angel out, carry her to the garden and place her on a blanket in the shade of her brother’s climbing frame where she can feel the warm breeze on her face. And I hide away in the corner, bury my face in my hands and weep hot stinging tears of pure helplessness and self pity for 15 minutes until the intensity begins to subside, whereupon I literally slap myself in the face and tell myself to get a grip. I know I will cope with whatever comes my way, I know I will, so “Bloody get a grip woman and get over yourself.”
And I did. And I knew that this mourning would pass, quicker than the last time it surfaced. The feelings are just as intense, just as real, but I am able to pass over them faster with each uprising. It’s all part of the Stages of Emotional Reaction / Cycle of Grief we learnt about on the Parents’ Support Workshop. I know it will always be there no matter how well adjusted I become as a parent or we become as a family – there will always be a situation that for a moment takes me back to that feeling of absolute engulfing sorrow suffusing every part of my being. Maybe when a friend’s daughter gets married or has a baby, or a child I know passes her first ballet exam. There will always be moments that will engulf me with sadness no matter how happy I am for others. But each time I get sucked under by the enormity of this sadness, I know it will be but a fleeting moment in the well of happiness and love that my gorgeous girl brings with her.
I wipe my tears, go and make myself a cup of coffee and then return to watch her in the garden as she sleeps, wearing a small smile of contentment on her face. My heart wells with love once again and peace returns as I gaze in wonderment at my angel, sent to earth to fill my life with love.