Summary of my life altering events

I am compelled to write Jason’s story. Jason’s constant strength and courage, wonderful dry sense of humour, positive attitude, and a zest for life despite the forces of NF2, is so inspiring and continues to inspire. My story as Jason’s Mum for other Mothers (parents)  struggling with how to get help for your child who is ill with brain tumours and uncontrolled seizures. Receiving a diagnosis of a rare condition called Neurofibromatosis 2. Obtaining an unofficial degree in neuroscience. The difficulty in finding the right medical Drs for your child and the shower of white light that comes about when it happens. Family life. Two younger children to nurture and protect. Staying brave for all your children. Marital strain. Trying to keep the home happy and light. Working. Operating a horse boarding stable . Exhausted. Trauma of walking down a train track in the bitter cold amongst grey desolate woods firstly hearing the hissing of the smoldering wreckage..into my sight is the shocking stack of burning mangled train cars that Conor, my brother, my only sibling horrifically died in. My Mum severely traumatized. Becoming your ill child’s advocate, friend, confidante, caregiver and protector but most importantly a mother. Marriage crumbling. Being at Jason’s side through nine brain surgeries, four full courses of radiation therapy…25 treatments per course. Jason defining stoic. As I write this I can hear the double doors slam shut and on the monitor watching the red line intersect his brain, Jason attached to the machine by a metal frame clamped to his mouth. Bravely enduring the suffocating feeling of the facial mask used to secure the head for stereotactic radiation. His will and determination to get back to college to complete the one year course, that due to brain tumours rearing their ugly heads, took 7 years. To never give up no matter what. The constant pressure on me to keep an upbeat positive exterior no matter what, while inside I am bubbling up with worry, sadness and so much fear. It was my mission to carry the stress and worry for my son and allow him to live as normal a life as possible all the way through, and I am relieved that as much as I know I was able to achieve this. No idea what lay ahead. Two and a half years ago Jason died. At that very moment ‘I’ was no longer. Numbly existing on my bedroom floor curled up tight under the extreme grips of grief. How I got to here from there I am not sure. Worried for my beloved daughters in their extreme sorrow losing their brother. Trying to stay strong for my precious girls. Suffocating. I didn’t know any other life than to care for a child and in the past 10 years of Jason’s life caring for him from morning until night. I knew no other. Amputated..lost.  Closest to insane???? Sent to the edge. Writing.. my fingers wrapped around a pen hearing the scratching mark watching the pen move across the journal page back and forth leaving a mass of words behind…The story of how yoga and meditation threw me a lifeline when I was drowning. With the support of my daughters and a few close friends I joined a housesitting company in order to get far away and exchanged pet/house sitting for a place to stay and arrived in Ireland last Sep. Many beloved 4-legged friends made. I was led to places of such beauty and serenity that touched my soul, from the Wicklow Hills to the forests and lakes of Roscommon, to the Cliffs of Connemara, the beaches of Mayo…  Mindfulness and meditation retreats. Reiki Foundation of Ireland certificate. Teachings of Venerable Panchen Ötrul Rinpoche in Ireland.Teachings of Thich Nhat Hahn at Plum Village, SW France. Such a profound impact on me. Made new friends for life. The places I found myself arriving to were so spiritual and healing… Bude, Woking, Monsegur…felt like a higher power was plotting my course and I was just the passenger. Most days I would write. I could not have made it this far without the therapeutic nurturing healing of restorative yoga. My wish in this new way of living is to be able to pass this on to help anyone in trauma. So much so I received my Restorative Yoga Teaching certificate last year.  I would like to share this nourishing practice. To pass on the coping tools in my toolbox. To offer some healing and compassion in trauma and grief. I am not sure how this will all come about but I know it will present itself when the time is right. Right now I feel and hear the universe telling me write, share, help, inspire, so the journey begins.

 

2 thoughts on “Summary of my life altering events

Leave a reply to Fiona Rhodes Cancel reply