Tuesday, 23 June 2015

A Letter to myself as a new mum from the carer I am now

Mother and Daughter June 2010
Dear Me
I look at that positive smile and I know you are putting on your 'brave face'. Behind that mask you are really scared of what is going on. I can't tell you not to be scared because it is that fear that will both drive you mad and motivate you to get up in the morning. I can't tell you that it will all be over soon because it takes 14 months to get your beautiful daughter home. I can't tell you that this picture will be one of many of you holding your daughter as she gets well because it won't be. She becomes so sick that you only get to hold her 10 times in 3 months. 

I can't tell you that there will be lots of support and help from friends and family, because there won't be. Sorry kid you really are on your own. The reality is that people don't like to suffer, let alone take on board someone elses suffering, and they are too afraid to come to the hospital so don't bank on an army of visitors. You will be lucky if you get a dozen all year, and most will only visit once because seeing a child with a tube hanging out of its nose is too unbearable, although some how it's ok for you to bare that pain alone. 

You will experience a pain in your heart like no other, most of the time it will feel like there is a knife in there that someone forgot to take out. It will take you 2 years to realise that knife is your grief and anger knotted together, and it takes you another year to let go of it. Occasionally it will try and knot itself back up again but you find that your Buddhist Faith helps you to gather yourself together and learn the art of letting go. 

You will learn to adjust to a world that is not your norm, you adapt and find a new 'normal'. Life as it was tears you apart the second you try and grasp some of it back so don't try. Just be present with the day to day, and a new stronger you will emerge that sees the world with a different eye. 
You will learn to be a nurse, a paramedic, a doctor, a teacher, a physio, a therapist, social worker and lawyer, and ultimately a Carer. As for being a MUM, that role has to take second place to the role of caregiver. 

Ok so I am not selling this am I, sorry to put it bluntly, it's a job for life with shit pay, loads of unpaid overtime, and no holiday. Unless you put a gun to your head or somebody elses you won't get any respite either as you will be deemed able to cope until you collaspe. 

Are there any positives? Absolutely! You learn to choose your friends more wisely, you learn that the words 'If there is anything I can do' actually translate as "I am only being polite please don't call me". You learn that there is an army of amazing parents just like you who also feel that same guilt, grief and exhaustion. And while your caring roles might bring different challenges you understand each other in a way that nobody else can. 

You learn to pick your head up off the floor and stand up for your rights and those of your children, and this is an ongoing challenge.  Not a naturally positive and confident person you learn that with everything that you have been through life is too short and it is important to seize the moment when ever a beautiful one arises. 

You learn that disability does not mean inability, it just means learning how to do something a different way. It won't be easy and there will be times when you fall in to a heap of tears, but there will be amazing little miracles every day. Your children will show you the world in a way that you could never have imagined. And remember that doctor on day two that said your son might not walk and talk and might be deaf or blind. Here is the good news... they got it wrong. Infact by age five he can't stop talking. Yes his brain is a little different, there are challenges, I can't hide that from you. In five years time in June 2015 you will have made it over the first hurdle, you are now accepting that your life is that of a Carer, a little of the old you is still there, but you will learn to like the new you a whole lot better. 

love, and great strength, from me to me. 
and prayers, lots of prayers. 

Namo Quan Shi Yin Bosat


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.