By Marie-Louise Carroll
This article is part of My Plan Manager’s guest blogger series.
When my youngest son was 11 we were told he was going to die from a bleed in his brain. Jordan was in hospital for 3 months and learnt to walk and talk again. Our son had changed and we grieved for the boy we lost but we rejoiced in the boy we had.
For nearly 10 years, every year, he has had either chemo, radiation, biopsies and trial drugs and MRIs every 3 months. He had two more bleeds in October 2014 and then developed narcolepsy as well. He has missed his graduation, his school formal, his dream of university. He has never driven a car and for nearly half his life has had to deal with endless hospital and specialists visits.
Jordan dreams of becoming a Paralympian but his illnesses keep getting in the way.
Our little family has gone through some very tough times and there were times I didn’t know if we would get through.
I used to feel normal
I grew up with dancing and music and I made a career of it. I got my first professional job in a big theatre musical at 16. I married my best friend and had two beautiful boys. I was ignorant about how hard it is for kids and adults with disabilities, then one night our whole world changed and I changed too.
There is only who I am now and that’s a tired, emotionally drained person who lives for now for a son who has disabilities and medical problems.
Since my son’s illness I have never really known real happiness without fear. I think as mothers we are always watchful but when your son has been so close to death and cheated it, you are always watching for death to return.
MRI’s for my son every 3 months for nearly 10 years are constant reminders of what has happened to him and what could lie ahead. There are also constant trips to hospitals and specialists. Even a cold has the potential to become life threatening. I worry and stress and dwell on what I can’t change.
I am just a mother, trying to be the best I can for my boys
I am also a carer, a nurse, a support worker, a personal assistant, a wife and everything else I’m needed to be. I am so tired emotionally but I have to keep going.
Sometimes I am lost in a world full of medical crap that consumes my day, weeks and sometimes months.
I struggle, I cry, I’m sad at times, I’m ferocious when it comes to my son’s rights, I laugh (not enough), I worry (too much) and I love. I’m imperfect and I know I have flaws. I’m opinionated and passionate and make my husband crazy at times. I mostly get it wrong but I’m always trying to get it right, and I usually have no idea what I’m supposed to do.
I’ve tried to do amazing things – better advocacy for the vision impaired and blind, more awareness for people with acquired brain injury. I wanted to be a famous singer when I was younger. I had steady work singing and dancing but I certainly don’t think I achieved much. My husband and I organised an awareness walk for children and young people with Acquired Brain Injury and although we achieved much on the Sunshine Coast, it had no impact in Brisbane, so I feel like I failed my son.
My personal wish is that Jordan’s tumour never bleeds again and that he has a wonderful, healthy, happy fulfilling life. If that happens then my wish for myself would be for peace within me and finding pure happiness again. I wish Jordan could have a more normal life with better inclusion, such as employment and social opportunities.
I don’t see a lot of strength in me; I suppose though, when it comes to my son, I will fight for him and his rights as long as I can draw breath.
Marie-Louise Carroll is a mother, carer, nurse, advocate and support worker to her beautiful son Jordan, who is 24 years old. When Jordan was 11, he had a massive bleed in his brain which caused a stroke. Marie learnt to be an OT and support worker to him and then (to pay for his skiing goals) she became a support worker at Vision Australia. In ‘past lives’ a singer, dancer, office worker, lollipop lady, dance teacher, Marie is currently a disability rights advocate with regular public speaking engagements.