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Grief and Acceptance in Chronic Illness

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Last week Millions Missing UK shared a photo on their facebook page about the cycle of grief in chronic illness. This really hit a nerve with me and I have found myself thinking about how our families journey has panned out.

A little over three years ago I wrote about acceptance being a huge part of my chronic illness journey and how by trusting the journey I was able to live a full and happy life, no matter what is going on at any time with my health. Little did I know when I wrote the article that this trust would be tested as my oldest child’s health was about to spiral into a rapid decline.

Without warning I was catapulted again into an existence consumed by feelings of helplessness and anxiety, the overwhelming frustration on this new journey only overshadowed by my complete lack of control over anything. Health, education, management, healing. The process I was going through was far worse than any grief I had felt with my own diagnoses. I felt helpless and numb. Where once writing was an outlet and helped me to heal I now became paralysed if I tried to put pen to paper.

Grief Cycle
photo Kubler Ross
Moving Forward

Slowly, very slowly I have began to find empowerment in securing the right provision for him, I have poured myself into work and I find myself less disconnected from the world around around me, smiling and saying I’m fine is not always a lie.

It is easy to underestimate the emotional impact of a child’s diagnosis and the effect that it has on a family. In my experience this has been much harder to deal with than any road that I have walked myself but I feel that I am beginning to move along in this cycle and coming to terms with what this means for my son – his new path, whatever that may be.

This year on 15th his birthday I spent hours scrolling through old photos, quite clearly you can see in his eyes the point that he became sick and it’s hard to find a picture in the last two years where he isn’t asleep. Instead of this process upsetting me this made me happy, proud of who he is, of his resilience, his humour, his acceptance. I know that I wouldn’t have been able to do this on his 13th or 14th birthday, I must be starting to heal.

Beginning to Heal

If you find yourself catapulted into this process – caring for a child who becomes sick please give yourself time, please be kind to yourself, tread gently, laugh, cry, scream and try to take the time to talk to someone. When the overwhelming helplessness makes you sick to your stomach every day you must know that your body can not live in that sate of fight or flight for ever, it will settle, slowly you will begin to move forward. It may be months, it may be years, but you will begin to heal and feel empowered, you will learn more than you know and be closer to the people that you love more than you could ever imagine.

With acceptance, true acceptance, comes peace. I’m not there yet but I am confident that I am on my way.

Here is my original article from 2015. Acceptance – Learning to trust the journey.
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