written by Heather Pyne, 2nd May 2019
One of my least favourite quotes I see thrown around the SEND and preemie pages on facebook is the quote ‘Someone said to me “I don’t know how you do it”, I replied “I wasn’t given a choice”’. Fact is, I WAS given a choice; I always have a choice and by not acknowledging the choices we make it is disempowering.
With my daughter (who has complex disabilities) I have made choices every single day since the day she was born which have shaped both our lives now. I chose to tell the doctors at her birth that I want try everything to keep her alive initially. I chose to walk up to theatre with Izzy when she was just 6 days old so that- had she died - she would not have been alone. I chose to push for skin to skin at every opportunity despite the risk this held. I chose for Ben to come and see his sister in NICU at least 5 times a week. I chose to be strong in front of others though I felt weak. I choose what we do every day, how much therapy she does, which professionals we engage with and which we don’t. There have always been alternatives. I could have told the neonatal team at birth not to push for her survival. I could have given up and put her into care. I could have disengaged with her. I could have not done her therapies at home between sessions. I could have chosen not to give her all the great opportunities she gets. I decided AGAINST these options. I actively chose to keep and care for my child and give her the very best life I can. I was given a choice and I made this choice. (I’d like to add I definitely made the right choice. My little Izzy is truly amazing and I love her more than I knew was possible).
The fundamental parts of my identity are choices. I choose to prioritise helping others over financial gain. I choose not to be spiteful and retaliate when people cause me harm instead, I choose to walk away without a look back or a second thought. I choose to continue studying alongside work and caring for the children because I am committed to finishing what I started. I choose to fight through pain, nausea and exhaustion every day.
So, I’d like to change that saying to ‘Someone said to me “I don’t know how you do it”, I replied “I do it because I am filled with more strength and courage and love than you can possibly imagine - and it is a privilege to do this.”