Janette's Story

Janette's Story

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When my son Thomas was born on March 28th 1986 I was catapulted into another world, a world I hadn't expected, wanted and one I certainly would not have chosen.

When my son Thomas was born on March 28th 1986 I was catapulted into another world, a world I hadn't expected, wanted and one I certainly would not have chosen. Thomas had a very difficult birth with many serious complications. The final diagnosis was cerebral palsy, spasticity and epilepsy after a "massive insult to his brain".

Cerebral Palsy refers to a group of disorders affecting a person’s ability to move and is thought to be due to damage to the developing brain either during pregnancy, during the birth or shortly after birth. However, recent research is pointing towards a “genetic” component. Thomas had “spastic quadriplegia” which meant that it affected all of his body. He was not able to make any meaningful movement, his limbs were very tight and became more and more contracted over time. He was nonverbal, was not even able to cry and he required total care 24/7 for his entire life. He also had epilepsy and although he was on medication his seizures were never “controlled” and that meant that he had a lot of them.

It hadn’t started well and there were times I hated him for being there and I blamed him for making me feel all these uncomfortable feelings, for ruining my life, for not being the child I wanted.

It would be nice to say those 30 years were fine, that I found an easy way to go through it. Truthfully, it was the hardest thing I have ever done and there were countless times I thought I couldn't go on for one more second, let alone a day, a week or, heaven forbid, another year. I suffered at times from chronic fatigue and many times from depression. Countless times I thought about ways to end the pain. I was filled with anger, rage, self-pity, grief ….. but no one in my family wanted to see or acknowledge that. "Everything will be okay" they said.

Having a child with a severe disability forced me to go beyond my fears and to grow as a person beyond anything I could ever have imagined. Even though I had a fairly happy childhood, it was not without it’s challenges and stresses and I was a very fearful person. My earliest childhood memory was of being afraid. I was afraid of going outside of the norm, afraid of making waves, afraid of not being liked, afraid of being seen, afraid of saying no...

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My family continued to tell me it “would all be okay” so I suppressed my feelings and my tears and "put on a brave face".

Thomas' birth forced me to feel and eventually to acknowledge the immense pain I was in. I wasn't just confronted with the difficulties of caring for a child with a severe disability, I was brought face to face with every unresolved emotion I had ever had, every past trauma and every belief I had about myself. It was overwhelming. My family continued to tell me it “would all be okay” so I suppressed my feelings and my tears and "put on a brave face". I did "all the right things" and I was a pressure cooker ready to explode and destroy everything around me.

People are incredulous when I tell them that a weekend of crying was so wonderful.

It was up to me to find my own way so I began to search, finding ways of healing I didn't know existed. When Thomas was two I did a Reiki course and cried all weekend. It was the best weekend of my life. People are incredulous when I tell them that a weekend of crying was so wonderful. Strangers put their hands on my shoulders and allowed me to let go of all my pent up emotions; I surrendered control and allowed myself to receive. On the Sunday morning I experienced peace for the very first time in my life. Reiki is the lifeline that kept me tethered to the boat, to this life, this body, even though I still sometimes almost drifted out of sight. Even with this lifeline, the daily grind of unrelenting care took it's toll on me emotionally, physically and mentally.

Love for me isn’t a word, but a frequency and the most powerful energy that exists.

Looking back on it now, and with the gift of hindsight, I think I experienced all the emotions Thomas wasn't able to express as well. Thomas was never able to cry and could only express his feelings with facial gestures. When his pressure cooker overloaded he had seizures, lots of them.

For me, the most important thing was to love Thomas. It hadn't started well and there were times I hated him for being there and I blamed him for making me feel all these uncomfortable feelings, for ruining my life, for not being the child I wanted. It was obvious that our journey was to find our way to unconditional love. After all, what is the point of anything if there is no love?

It was obvious that our journey was to find our way to unconditional love. After all, what is the point of anything if there is no love?

The final piece of the puzzle came in 2007 when my friend Catherine told me about EFT or "tapping" and taught me how to do it. I immediately loved its simplicity and accessibility. I had finally found a tool I could use throughout the day and night to help me recognise and release emotions quickly and to heal the chronic anxiety I suffered every time Thomas went to his respite house and was out of my sight, and my "control". Surrendering control is not easy for a control freak! By combining tapping, visualisation and the creative power of my emotions I healed my anxiety to the extent that I could actually get a good night's sleep whenever Thomas was away.

I have huge gratitude for my husband Rod for being the best Dad ever. When Thomas was 10 we came within a hair's breadth of becoming one of the 8 out of 10 relationships that doesn't survive a child with a disability. However, I knew that Thomas needed both of us so I chose healing and we found ways to heal and be grateful for each other. With a lot of conscious effort we managed to make it through stronger than ever.

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My journey with Thomas reconnected me with God, not the God of my Anglican school days. I had thrown that out, along with it's associated dogma, years ago. 

It is coming up to two years since Thomas left us on the next part of his adventure and I have recently experienced the unexpected death of my mother. The difference is that now I love my emotions - even hatred, anger and grief - those that people will do almost anything to avoid feeling! The grief I feel after the death of my mother still threatens to overwhelm me at times, however I know I have many tools to help me and that I will make it back to a place of peace and joy and be able to think of her with love and gratitude.

My journey with Thomas reconnected me with God, not the God of my Anglican school days. I had thrown that out, along with it's associated dogma, years ago. What I discovered was the frequency of unconditional love or "God, Goddess, All That Is" as I call it. Love for me isn’t a word, but a frequency and the most powerful energy that exists.

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