Self-indulgent post, please feel free to stop reading.
Recently I watched a video of a gun dog scurry that my dad and I took part in 1987, I was 6. When I turned and spoke to camera it was like I was watching Allissa, the likeness was jaw dropping. Mannerisms, smile and face, even my body shape and size looked identical. I was shy but playful, sticking to my dad as I always did smiling, chatting and laughing. As I watched myself skip, jump, run and move freely through the fields and riverbank my heart broke a little to see the version of Allissa there should have been.
I realised that I have never actually said out loud (perhaps I have to Boris back in the dark early days) that this is not what I wanted for my child, it’s not what I expected and it’s not what I deserved. I followed ALL the rules, I did everything right for my bump even before she was a bump, I prepared my body for a year before we got pregnant. Throughout my pregnancy I ate foods to aid the development of the baby depending on what stage it was at even foods I didn't like. I trusted that all would go as it should (I use ‘I’ here because I don’t want to speak for Boris and I’m sure he will be cross with me for sharing such intimate and melancholy thoughts). Pregnancy was normal, labour was normal and pain relief/intervention free, my focus was always on what was best for the baby. There is no cause or reason identified for Allissa’s brain damage and there probably never will be.
It goes without saying that I adore my daughter with all my heart. She brings so much joy to everyone she knows especially me. She is inspiring, tenacious and I do everything I can to be the mother she deserves, I will always put on my coping face and get on with things because that’s my nature, however, it is hard every single day. Not just physically, not just financially, mentally and emotionally too. I am not the person I used to be, I have had to change, become harder and more selfish. I do cancel and let people down sometimes. This is actually a skill I am trying to teach myself because ‘no, I can’t’ doesn’t come naturally to me. I only cancel on the days I know I am not strong enough to hold it together in public, on those days we hibernate at home in PJs and basically cuddle our way through to the other side. Or we go somewhere quiet and outside so that I know I am safe to cry behind big sunglasses if I need to.
I feel ashamed to complain, especially because I know so many other people who are in more difficult situations than me. I also know some truly awesome people who actually DID chose this life. It’s not easy for them either but they are strong and kind and amazing beyond words.
I wish I was stronger and knew more about how to help Allissa through the world, I wish I didn’t feel the need to apologise for fighting for her rights and I wish I didn’t have to fight. I’ll never stop reading, learning and trying until I’m the person I need to be for her.
If you have actually read to the end of this rambling, thank you for caring! The hope is that I will feel better for having gotten this off my chest but in reality I will probably feel embarrassed to have opened up to so many people. I normally use humour to cope with all problems or issues I encounter, the day I wrote this post I was too sad to laugh about anything. I have since 'put on my big girl pants' as advised by a wise lady and cheered myself up.