Friday, 12 June 2015

Who Cares for the Carer?

  If you have stumbled upon this via the title you are either A) a frustrated, worn out carer like me looking for some words of comfort to let you know you are not alone or b) You are a new mum to a child with a disability and like me you are still getting your head around what that really means or C) You know someone who is a carer of a disabled child and you want to try and find a way to support them and understand their world. I really hope there are lots of C) reading this because you have no idea how alone, tired, and desolate your Carer friend feels and if you can take time to give them your compassion, not sympathy, then it really will be much appreciated. 
The title of this blog is The Compassionate Carer, not because I think I am a Compassionate Carer at all. It is because I am trying to learn how to become one. As I write this I have been a Carer for five years. Now I feel the tears well up because I never think 'Oh I have been a mum for five years!' No, that never has time to enter my head. I knew my fate the day after my twins were born when myself and my husband were ushered in to a cosy room with flowers on the wall. I renamed it 'The Bad News Room' nobody ever takes you in to a room like that to give you good news. The words 'Your Son has had a Stroke in the Womb, which has left him with Brain Damage'. I remember shaking as I tried to take in the news and the blur of the other words 'he might not walk or talk, we just don't know what disability he might have'. 
As I allowed my self to come to terms with this news we then found ourselves a week later in a different neo-natal unit with twin 2, my daughter; sitting once more in another room with a comfy sofa and flowers on the wall, I braced myself for the worst. 'Your daughter has contracted necrotising entercolitis, its pretty bad, we are not sure if she will survive the next 48 hrs'. By a complete miracle she makes it through, but two bowel surgeries later she is left with short bowel disease and the need to be fed her milk via a gastrostomy tube and intravenously fed Parental Nutrition. Add into the mix the discovery of a genetic condition and here I am five years later a mother and a Carer for disabled twins. 
I am like thousands of other Carers; we often have no compassion for ourselves, we don't give ourselves the space to sit with our suffering and what has happened to us. We don't praise ourselves for the things we do well for the person we care for, when we want time for ourselves we think we are being selfish. The identities we once had are gone, we become angry at what we have lost, we grieve for the person we were and the person we will never be again. 
My faith a Pureland Buddhist has helped me a lot.  With faith in Amida Buddha I have been able to find light in the darkest of days. My intention in this blog is from time to time to draw on my experiences as a Buddhist, along with my life as a Carer to share my thoughts and feelings on how we can as Carers learn to bring compassion to ourselves as well as to those we Care for. 
If you are already a Carer then me posing the question Who Cares for the Carer? will no doubt have you laughing, because you and I both know the answer is 'No One'. So if we don't look after ourselves, if we don't give ourselves a little bit of compassion then nobody else will. 
Gautama Buddha said “If your compassion does not include yourself, it is incomplete.” 
I am doing my best day be day to work on that one!

Thanks for stopping by and sharing the journey on the road to Self Compassion.


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