Over the past two years I have witnessed a suffering in Hana so deep I found it incompatible with breathing. How could I draw in another breath? How could the world keep spinning and life continue to unfold when my daughter was being tortured in front of my own eyes? I wished life would hurry up and pass me by and I truly felt that when it came, death would be great release. I imagined how it would feel to be free of the agony I carried in my heart every day, watching her suffer. I imagined the bliss being able to float out of my body that hurt me beyond my imagination – watching my child suffer was worse than anything that could be inflicted upon me alone, I’m sure every parent reading will understand this.
I talk about death, but I was not suicidal in any way and not depressed either. You might be surprised that I haven’t been depressed over the last two years, torment isn’t the same as depression. I was still filled with awe at the beauty of the world and was still hit with unexplained feelings of joy or ecstasy from time to time. My days weren’t endlessly grey without hope but blue-black, or red hot with intense emotion, the gut wrenchingly bad and sometimes the passionate good. But when the days were particularly dark I would look at the evening stars with longing and I embraced a growing sentiment that death wouldn’t be such a bad thing after all, when it was ready to take me, I would go willingly.
I wrestled for two years – fighting – to restore health and wellbeing to Hana and I knew that I would not be at peace until I had 1. Achieved and succeeded, or if that didn’t work: 2. Died. I would fight until the day I died for her. I asked myself the question, will I ever be at peace again? Can a parent ever have peace when their child is suffering?
How could a parent ever be at peace when their child is being tortured in front of their eyes every single day, day after day after day, incurable, no end in sight until death? The hunger, the bodily pains that flitted from one body part to another, the headaches, the ongoing terrible headaches, the heaviness at having to carry three times her natural body weight, the hunger, the cancer, the anxiety, the constant fits of crying, a stolen childhood…
There was no peace for me. There would be no peace for me. For Hana I would endlessly ‘Rage against the dying of the (her) light,’ – I would not let her ‘go gently…’ either (*Dylan Thomas*), I was a warrior, for her. The only way to live with that suffering was to fight it, to try and kill it, to hope, to re-create happiness and to there find peace.
And I was close to that – I managed two medical world firsts in 12 months, facilitated treatment options her doctors weren’t aware of, brought about weight stabilisation with the lap band and started an intensive, exciting journey to brain healing. I travelled the world. I would do this, I would cure my daughter and then I could be at peace again. Hana was doing very well after her lap band and Dr Kahn’s laser therapy – I was winning! We were going to move house and buy a place in the country, we cut off our hair, symbolic of renewal, new school, new beginning. I was so sure things would go my way because I had created this new future myself, with blood (Hana’s), sweat (mine) and tears (our collective contribution). I thought 2016 would hold peace for me, and I knew I had earnt it.
By the end of the first week of January I realised how utterly foolish and wrong I had been. My fragile world disintegrated around me like sand falling through my hands:
Hana began gaining a kilo a week – out of the blue &
the Tumour was back.
What now? I wanted to curl up in a ball, weep and never stop. This was too much too bear.
The creeping, suffocating darkness returned to our days, my husband and I sleeping fitfully, sick to our stomachs, unable to look each other in the eye simply because our eyes communicated too much pain. The oppressive heaviness, dread, that goes hand in hand with 4 a.m starts when restless sleep ebbs away to days that only held fear in store. Fear that coiled in the stomach like a snake. Frightened, whispered snatches of conversation in the bathroom as I updated him on the weight gain, or we discuss the inevitable fallout of radiation on her delicate brain or the scar tissue from another invasive surgery. And we grimly envisaged what her future had in store: Her future to which we had to be helpless bystanders.
We began to work through our options, intense research once again, then made our tentative plans and started Hana on Metformin for her weight. The chaotic start to the year calmed once we decided we would take our time with our decision and a little dust began to settle. But I wistfully yearned for the peace that I thought I had earnt, why did life have to be in turmoil again? Why couldn’t I be allowed to love each second of my life as I used to when my daughter wasn’t suffering? I desperately wanted to be joyful, peaceful and carefree every day and I couldn’t ever be those unless Hana was well. Surely I deserved more than this, after the mammoth effort I’d put in to ‘making things ok again.’
Then something strange began to happen.
For some reason I was slowly becoming aware that I did not carry any negative feelings or habour hatred towards Hana’s illness, and as you know from this post (Love yourself and that includes your cancer) I was teaching this to her too. I was curious to realise that I no longer hated that this life had chosen us and I stopped feeling the downwards pull when I observed the simple, happy go lucky lives of those around me. As the negative feelings slipped away I began to feel glad I’d been moulded by the past two years and felt genuine gratitude for having the chance to change and develop as a person. I also realised I was no longer looking at old photos of Hana pre-tumour diagnosis with heart break and a terrible longing for the past. That was then and this is now. Would you go back and be the person you used to be? No…I actually like who I’ve been forced to become. As I became aware that my feelings towards our situation were radically shifting, with that change of outlook something else was happening too: peace was beginning to find me.
But, one great difficultly still remained, I just couldn’t see how, on a practical daily level I could reconcile my daily dealings with Hana’s suffering, to come face to face with it in it’s rawest form – tears and terrible pain – and NOT SUFFER with her? Practically speaking this seemed impossible, her suffering caused physical, biochemical reactions in me that I could not control. How could I not hurt and suffer with her for as long as she suffered?
I was carrying these thoughts for a few weeks until, a short while ago I was dramatically forced into realising what else I needed to do.
‘Open your mind &
Listen to what people are saying.’
This is my ongoing lesson, something Hana has taught me consistently over the past two years LISTEN to what people are saying. Listen…The overwhelming turnaround has been incredibly dramatic and completely life changing. I have a lot to share with you!
I will end with the beautiful ‘Namaste’ – ‘I see the light in you’ – and look forward to sharing more with you, when the timing is right.
The journey has just begun…share it with me by looking through my old blog posts and check in with me on the Facebook. Thanks for reading and please do share this post if you feel the intuitive pull to, there are so many people I’d love to connect with.