Have you ever thought of your life as a film?
A fantastic movie in making, with a start (birth) to preparation (childhood), the catastrophic problem (teenage years – young adulthood), climax (adulthood – middle age) and the end (death).
I definitely have, and I had a great plot plan for it.
I was to have an encouraging upbringing and during teenage years, I was to find my true love, the One. As a clever young adult with the True Love on my side I would work hard to get my degree in something that would give me the tools needed to save the world. It might have been politics, a career in teaching that is highly respected profession in Finland or a degree in journalism, on my way to uncover the hidden truths in society. Then, as a qualified professional who already had a respectable work experience under her belt, I would safely ease myself to motherhood and have an even number of children – either two or four, take a pick. While nursing my offspring, I would not stop working; family coming first, but still putting my invaluable effort in to saving our universe.
Life disregarded my plot plan.
I didn’t find love within my teenage years, and I was certain I would never find it. Frustrated with my Life’s lack of following my will, I decided to trash it all. Instead of getting a degree, I flew off to Australia, where I spent 2 years backpacking and getting work experience in customer services and on a banana farm.
Back at home, I started studying Tourism, forgetting my ambitions for saving the planet – my plan then was to save myself by living in exotic hidey-hole, as away as possible from a normal every day life. While learning about aspects of Tourism and Business, I escaped yet to another country to do an Erasmus Exchange year.
As I had no idea, I fell in love with an English man. As shocked as I was, I did try to finish off my degree, but ended up getting up the duff. Well, as flexible and amazing as Finnish Higher Education is, I planned to finish my degree while nursing my baby.
Well, our baby was born disabled.
No, we did not expect it. It all happened so fast. While my waters were whooshing to the floor, midwives heard from the baby’s heartbeat that she was not doing well. As she was delivered promptly and resuscitated on the pregnancy week 33, she was then taken to NICU. Three hours after her birth, I saw her for the first time.
Two months later,
she came home to us. We still clung on to the hope that she was just a premature baby, healthy and normal otherwise.
We were proved wrong.
First, she was diagnosed with profound hearing loss – she could not hear a thing, unless her ears were pressed on a loudspeaker in a heavy metal rock concert.
Then we learned she has got cerebral palsy. She might not ever walk, or even sit independently.
Before long, we were yet to find out that she had a cerebral vision impairment, which meant her brains was not great translating the visual messages her eyes were sending it. She was then registered blind.
Finally, she was diagnosed with epilepsy and reflux. Now, she is tubefed and she has a strict daily schedule of around the clock medication. She doesn’t go anywhere without a portable oxygen cylinder, unless we have an oxygen compressor in the room as she is rubbish at breathing without aid.
I couldn’t finish my studies.
I have not been even able to think about going back to work, I am very much needed to care for my firstborn. As our family has grown with yet another lovely human being, my True Love – the English man – was needed to step off the career ladder to care for his family. Even that was not enough – for all of our wellbeing it is vital to have a third adult – a night carer – to look after our daughter.
Looking back to my life as a 30 year old
without a degree and living off benefits, I feel ashamed. I was not supposed to be that woman. I was not supposed to be the stay-at-home parent who relied only on her husbands wages, or worse, the state benefits. I was supposed to support myself and my family financially and save the world for Pete’s sake!
But I am in love, and I have a wonderful family. I love my step-daughter-to-be, my fiancés firstborn, and my firstborn “Elisa” and my youngest, “Melody”.
Even though the life has not yet turned out to be how I anticipated,
I’m trying to tell myself it is not bad. And maybe I can find a new meaning, another way to make a difference in this ever-changing world.
With this blog, I’m hoping I can change the way you see other people and especially people with disabilities.
I’m hoping you will see my firstborn as a child, not as a disabled thing. Even if I’ve only described her here with her diagnoses, she is so much more than that. But that is another post.
I will be back.