Bitter, Sweet Vinnie

FEAR -

This morning I read this wonderful piece by Queen Serene at
http://www.literarymama.com/creativenonfiction/archives/001606.html

I felt a lump in my throat when I read "I don't have a problem sending my other kids out the door in the morning," Jen says. "But every school day, after Jake gets on the bus, I watch it drive down the street until I can't see it anymore." [Jake being her son with 'special needs']

"I watch the bus drive away, all the way". I didn't really think about it much more though - simply that it had been a beautifully written piece and that I could really relate to that mum and the bus. I recognised the difference in anxiety I feel about Hannah compared with Kit.

Later that morning I took the twins out to their cousins and they had a great time. I have to be careful when they are all on the tramploine - Hannah's head just about bounces off as she falls to the ground while they run and jump and roll with no difficulty. Hannah's legs splay, she loses her balance, she still walks wonky and jumping is a long way off but she wants to have a go and I don't want to stop her. I got in with her and the other kids and make sure I remind them to be a bit gentle, I try and make sure no one kicks Hannah in the head or lands on her and I try and help her have fun with the others - we play ring a rosie. She gets a chance to walk around etc. They all have a lot of fun.

On the Drive show I listened to in the car on the way home, they were asking listeners to ring in and tell their greatest fear. There were some sad, interesting, scary and wacky fears being shared. It made me think of mine and that bus. That is my greatest fear - so deep it could paralyse me if I let it so I just paddle around the edges - I couldn't ring up and put it into words for Sydney drivers to hear one afternoon that is for sure. This fear runs too deep. It is too real.

Every day as I drive to work I pass groups of girls waiting for the bus to take them to one of our local highschools. Without fail I feel fear grip me, my palms feel clammy, my stomach is in knots. I try and imagine Hannah one day being like them. Carelessley wiating for the bus, innocent and cruel as only teenagers can be. So vital, so independent (why can't I control everything she experiences for ever???). Peering at the world beyond childhood. Paddling the edges of adulthood. I dread Hannah's teenage years. I dread what might happen when P and I turn up our toes even more - so much more in fact that I don't dwell on it if I can help it. One day we hope to establish a trust fund or some such thing to give her some financial security when we are gone. More than that I can't bear to contemplate.

One caller rang in and boldly said he feared NOTHING. What we need, he said, is LOVE. Love, I scoffed to myself. If he can say he fears nothing then I don't think he has had a child with a disabilty. More than that though - because I love Hannah absolutely just as I love Kit. So fear is an essential part of love. When Kit is sick or upset I feel the same protectiveness and intense love I get watching Hannah on that bus. Her vulnerability means that those feelings are closer to the surface and manifest themselves more often but it is there for both my children so perhaps love without fear is impossible. I fear that she will get hurt, that she will be left out.

Later that night when the twins were safely in their beds dreaming I watched My Brother Vinnie Check out:http://www.infilm.com.au/features/messagesticks.htm. Wow. It was a wonderful 30 minute show as part of a series called Inside Australia that SBS are showing. Aaron Pedersen is a hot diggity dog actor. The doco followed him and his brother Vinnie. Vinnie has mild cerebral palsy and an intellectual disabilty. It was a sensational show. Aaron very eloquently described how Vinnie had seen something in him, called on him to look after him - and then he said how it was a gift - he had gained so much from the love of his brother, they both had. They had had a difficult childhood and later on when thir Nana died Arron had shouldered the responsibility for Vinnie with no respite care and no government support available. It got too much and he described what a lifeline it was for both brothers and their relationship when Mum Francis took Vinnie in to live with her. Aaron is still very much involved with his brotehr but the move gave them both a bit of space to breath. Magic stuff - this doco was more powerful for its lack of sentimentality but its powerful respect for the human spirits it was portraying. A positive hopeful piece. A good way to end my day.