Tuesday, 29 July 2014

Reflections of a Parent Carer

Chloe and I on my birthday at Peppa Pig World

I have not posted for a while because of a significant event in my life, I turned Forty. I know it is meant to be the new thirty but it felt like a really big deal. It is not that I suddenly feel old (though some days I am so tired I feel twice my age) it's that it made me reflect on my life.

Success is our world is measured by home, family, work and health (including emotional well being).We like to be able to put people in boxes partly based on what they are contributing to society. When we meet people for the first time we naturally ask "what do you do?" Meaning what job do you have. "I am a parent carer" is not the easiest reply to give. Its not what I trained to be- I have a Drama Degree from Manchester University and a Post Graduate Diploma in Community Theatre Enterprise from Liverpool Hope. Before I had Chloe I was an arts manager part time and drama specialist part time. I ran a theatre company with learning disabled actors for three years which I loved. Sometimes that part of my life feels a distant memory yet I have kept in touch with the company of workshop artists I belong to and I have worked with them at least once a year since having Chloe. It's just not my main role any more.

In the lead up to my birthday I was struck by how much in limbo I feel. Chloe is becoming more independent yet in some ways she needs me more than ever. In the last two weeks before school broke up she was so hot she dropped my hand and walked independently with her long cane. This is a significant step forward for her (and me) and one I will be encouraging. It is so hard to let go, particularly as listening with her processors next to traffic is difficult for Chloe. Trying to develop her confidence while keeping her safe and aware of her limitations is vital, another key role for me.

I have to admit that my baby is growing up. We both need to separate a little but at the same time I know I give her the emotional security to go and try new things and go off with other people. It worries me that she would feel abandoned if I went back to work full time and I am not sure what I would do. In so many ways I am Chloe's champion. It felt really good teaching her school Braille skills for the summer fair and I think it helped her self esteem knowing that the rest of the school wanted to understand how she learns. At home we often sit and Braille together, sounding out each letter as we go. She needs to know she is not the only one who learns this way and that I understand the language she uses to read and write. Neil has also been taught Braille but it is my job to keep it up so I can carry on supporting Chloe in the best way possible.

But what about me?  Where do I fit in this world and what do I want next? I tried going back to Arts Management and it was just too stressful. I had to admit how much my life had changed and that I can not give what I used to. Maybe I don't care as much either. I don't have much energy or passion left after supporting my family. I am driven by wanting to get the right provision for my child so she can reach her potential. I want to speak up for the other families I know who are struggling to get commissioners and professionals to understand the impact of multi sensory impairment. I am happy to champion the cause of Deafblind children as it is the world we have inhabited for the last six years.

I adore being a Mum but all my love has to be focused on one child as Neil and I cannot have any more thanks to early ovarian failure. This is something I am still coming to terms with. Despite my grief I can acknowledge Chloe gets the benefit of our undivided attention and it makes us an incredibly strong, imperfectly formed family unit. I do have a wonderful husband, Neil who is a lovely man and amazing Dad but a very private person so I don't like to mention him in this blog too often. The three of us went away to Dorset for a long weekend to celebrate my birthday and had a fabulous time. I spent the actual day of my fortieth birthday at Peppa Pig World. A fitting tribute to Chloe, the biggest achievement of my life. The following weekend I had a big birthday bash with friends and family because after all, I might not know what is next for me but I certainly have a lot to celebrate.