and then she was 14

she nearly came today, 14 years ago. She came at 23.25 on the 6th. We were all determined (especially me) to get her out before midnight. A mop of black hair, a little wee thing of 6lb 2. I remember being so overwhelmed by her and then scared stiff when 2 hours later this little thing started hollering like anything and I had no clue what to do. Our first two years together were tough. I was on my own, although living with my wonderful mum who gave so much to us. There were times I thought I couldn't do it but I did. She was a beautiful baby and a beautiful toddler.

It felt like no sooner had she learnt to walk that her toddling soon became wobbly, The little girl with so much determination started to find things hard. Playgrounds became a huge fear for her, she hated to be off the floor as she must have felt like it was all moving. Walking down the street she would stumble and hurt herself so much. But in true B fashion she picked herself up and got on. No-one really felt much was wrong. But I did. I knew. When she was just 5, she became quickly very ataxic. Brain tumours were mentioned, MRI showed otherwise - other things happening - a potentially shrinking part of her brain. I was devastated but hopeful that it was not going to continue. They tested her for lots of infantile and childhood onset life threatening disorders. For 3 more years. When she was eight we got her diagnosis, unexpectedly. She had a label at last. A horrid, extremely rare label. My beautiful B would end up permenantly in a wheelchair, she would lose feeling and use of her limbs, and there was no clue on her life expectancy. and 6 years on, as things progress, she fights all the new battles that her condition brings her with fierceness and spirit. I fight all the other battles for things that her condition dictates she needs and between us we try to love and laugh as much as we can. We are a team and we are best friends. Last week we found out some bad news about her swallowing and today I live in more fear but yesterday she was 14. I am so thankful for that. I am so lucky to have her for 14 years. She has brought so much joy to my life. I would be lost without her.

Happy Birthday my wobbly pumpkin.