Wednesday, 18 November 2015

Yesterday was World Prematurity Day, How Could I Forget......time to reflect

So yesterday the 17th November was World Prematurity Day, lots of pictures floating around on Social Media of tiny babies cuddled up to their mummies looking cute. That's fine, I am sure for some people having a child born two or three weeks early, that is what they get. And I am sure that to you the reader who has never had a premature child, those photographs look beautiful, and you haven't really given any thought to the life beyond that picture. But the cute incubator shot is not the reality for those of us whose children are born in the 23-26 week gestation bracket.
The truth is its hell! And I am going to show it to you, and please don't look away.
I will give you the fluffy cute picture first, or maybe I should finish with that to numb your pain from the reality of premature birth. Sorry no, I will lead with the fluffy picture, otherwise you won't really take in the rest of what I am saying.

Grace in a rare moment of wellness, breathing on her own without additional help.

I absolutely wish that my experience of having my twins at 26 weeks had been as beautiful as the picture above all the time. The sad reality is that is wasn't. I couldn't hold my beautiful little girl for the first three weeks of her life. That is something you never get over. I didn't get to smell her, I didn't get to kiss her new born flesh. I didn't get to hold her and make her feel secure. By the time she was 3-months old I had held her only a dozen times. She was so sick most of the time that she could barely stand to be touched in her incubator. People don't tell you that because of the hourly blood tests, invasive injections and tubes down their throats, they can't bare even the tough of someone who loves them.
Recovering from her first major operation at just four weeks old. She should still be safe in the womb but instead is fighting a life-threatening infection.
In the picture above Grace is recovering from her first major operation at just four weeks old. She should be safe in the womb as she is the equivalent roughly of 30 weeks gestation in this picture but due to her low birth weight of just 1lb 14oz she is instead fighting the deadly Necrotizing Entercolitis (NEC). It attacks the bowel of low birth babies and the survival rate is pitiful. We spent the best part of the first 12 weeks of Grace's life not knowing if she would live or die. Her veins were shot to pieces from cannula's and long line's in her arms for intravenous feeding so a Central line was installed in her chest. It is visible in this picture above. Its an invasive procedure but a life saving one which allowed Grace to be fed intravenously for the first three years of her life. YES! I did say three years!!
Grace went on to have another bowel operation at 5 months to remove further bowel that had been attacked by NEC. Grace finally came home 14 months after her birth. Today I am her full-time Carer and the bond of Mother and Daughter is slowly growing, damaged by the months of her being in hospital and my inability to hold her while she was a tiny baby.

Twin brother Ethan. Suffered a massive Stroke at some point before birth. The bruising on his head is from an attempted forceps delivery.

Grace's twin brother didn't fair much better. A blood clot in his brain blocked a major blood vessel in the left frontal lobe starving him of Oxygen. On day two we were told the worst, he may be physically disabled, he might be deaf or he might be blind. These are not words you want to hear. I will never forget that moment when everything that felt safe and beautiful in my life came crashing down. Thankfully he is not severely disabled but he is a five year old boy with a neurological disability and I am not just his Mum but also his full-time Carer.

I know most people think that the effects of premature birth leave you the moment your children come home but the reality for those of us with children born very premature is that our lives will never be the same again. Often our children are left with disabilities that mean we don't just become Mothers and Fathers, but also Carers. We don't get to go back to our old lives, our old careers and the people we once were. The effects of early birth last a life time for both the parents and the children.

I didn't post this yesterday, not because I didn't care or because I had forgotten, but because I spent most of my day at a hospital appointment with my daughter World Prematurity Day probably past most people by because they were busy with life, because there are other things in the world to worry about right now.  I understand that this world I have lived in means very little to you, unless of course you are reading this and have lived it too! But the next time you see one of those fluffy pictures promoting World Prematurity Day, take time to remember those of us who have been through the worst of it. Take time to think about the parents in countries without suitable neonatal care that have to watch their babies die. Think about the parents out there who are juggling one child in hospital and three at home. If you know someone who has a child on a neonatal unit right now, give them a call, offer help, cook them a meal, help them with their home life. Often people feel afraid and don't know what to say, some people are too scared to send a congratulations on the birth of your child card. Send it, because we are proud of our babies. Whether you send one or not won't change if a babies die or live. You won't be tempting fate.  Do just about anything you can to let them know they are not in this alone.

Time moves on, my premature twins are now five, they go to a Special Education School, they have a challenging time, life will never be easy, but there is lots of love and lots of laughter in our house. Each child has a memory box containing the little hats and first vests and breathing masks they wore. They look in disbelief when I tell them they were only the size of my hand when they were born.  What ever hardships they endure in life their little boxes will remind them of their struggle to be here and I hope give them courage to move forward with life. If you can survive a premature birth, then you can survive just about anything life throws at you. And I think most parents of premature children would say the same thing about themselves. Our experience has made us in some ways harder, but it has also opened up a vein of love and compassion that we never new existed and it has shown us that nothing in life can be taken for granted.

I hope that on next years World Prematurity Day you will stop and take a minute to breathe in and connect with the many mothers and fathers and children who are touched by prematurity and in breathing out send them your love. Through a conscious awareness of all others sufferings we can change the energy of a situation. Lets change how the world sees premature birth and get people talking about how we can all help our family members, friends and loved ones through such difficult times.


Wednesday, 4 November 2015

No Space For Blame

The problem with our lives is that we become too comfortable in our own skin. Our feet ground us to the floor from the moment we begin to walk. Our steps feel secure and purposeful, they take us in the direction we want them to go in. Life generally stays like that for quite sometime until some disaster strikes. Our body might physically fail us, causing disease or impairment, or we might encounter some emotional suffering, the loss of a partner or child for example. It doesn't really matter what the loss is, it is just the fact that it is something that sweeps us off our feet. When we try to get back up and walk again, the landscape that we once knew has changed. Our feet don't seem to grip the floor beneath us as well as they did. We try to dig our toes in, yet still we cannot feel the earth as before. In our search for security and happiness we look for answers to our suffering and this is when the problem arises of placing the blame on ourselves or others for what has happened to us. 
Sometimes I feel as though I am in somebody else's body it doesn't feel like mine anymore. Pregnancy changes your feet, my old shoes don't feel the same post-pregnancy, my feet are much wider having carried the burden of twins. New shoes are better, new shoes aren't moulded to the body of the person I once was. I look at myself in the mirror and while my appearance is familiar I see that the emotional strain of the last few years has taken its toll on my smile. When I look in a full length mirror there is the unmissable C-section scar, an emergency cut through my flesh carried out without any regard for what I would look like once all sewn back up. When friends have shown me their scars, they have been neatly cut and sewn back up again. I have scar envy, my is not neat, it is a harsh reminder of the fear and danger that surrounded the need to cut me open. It is a reminder of the damage to my sons brain as he was trapped in my pelvis. Too much time was taken by the doctors in an attempt to push him out. I look at my scar and feel the guilt, 'What if we had got him out sooner?'. I spent the first two years of my son's life dishing out the blame. I blamed myself, I blamed the doctor, I blamed just about everyone one and everything, and blame turned to anger. This is not a healthy situation to be in and a 'self' that I do not like. The feeling of not having the ground beneath my feet in the same way as it was before has brought with it a lot of fear and anxiety that I am trying to overcome the best way that I can. I have begun to understand that things are no longer black and white or right and wrong, they are just what they are.
My son and daughter were both born in to this world with disabilities, this is neither right nor wrong, it is just life. If I sit for a second with the feeling that it is wrong then that is when bitterness and anger rise, that is the moment when I make the rest of the world my enemy, and I am not going to do that. If we live with the idea that something is either right or wrong then that is simply a way to trick the mind in to believing that this suffering is just a one off, and the rest of our lives will be comfortable, safe, and secure when of course it is not. The sense of security in our health, love, work etc is a delusion. The ground beneath our feet is never secure, our bodies don't last forever, lovers leave, jobs finish. Accept that change is part of life and very quickly the world becomes a more peaceful place. 
We have to be willing to be compassionate to ourselves, to understand that we are only an ordinary human being. We must accept ourselves 'Just As We Are' even the parts of ourselves we don't like. How do we get to this state?  For me it's a combination of things, writing and reflecting on what I have been through, meditation and my chanting practice as a Pureland Buddhist. Calling out to Amida Buddha brings to the forefront of my mind the fact that I am just an ordinary being and that Amida accepts me just as I am. 
The chanting or 'Nembutsu' helps to bring a greater awareness of my fragility, I am more emotionally and spiritually awake with nembutsu than at any other time. The process softens the heart, and allows me to sit with what I am feeling without being full of anxiety or fear of the parts of me that I am not comfortable with. Connecting with Amida through Nembutsu, lets me know its all okay. 
Through my practice my mind set has slowly begun to change. The child in me that used to always see things as right or wrong is beginning to understand that life is made up of so much more. I no longer have to take the blame when there is none to take. I can choose to walk a different path. I choose the Middle Way. 
Bad things happen in life, I could not protect my son in the time around his birth, and to take the blame for that would not be healthy for him or me, yet there were times early on when I felt like I had failed him. My stupid body had failed him. Thousands of women give birth everyday, with no problems, I don't know anyone like me. But the truth is that today like every other day there will be one woman who is going through what I went through, I feel that, and I am filled with compassion for myself and every other woman who will go through the same emotional and physical trauma that I went through. 
Parents of disabled children often feel a sense of guilt and blame even if they are not consciously aware of it. The result of taking the blame is that you then spend all your energy trying to some how put it right. The reality is however that this only leads to a constant craving and hunger for something that doesn't exist - a more 'normal' life. By walking the Middle Way, I choose not to be right and not to be wrong, blame will not suffocate me, in the same way that it did before.
The middle way means not holding on to any version of yourself so tightly that you can't keep your heart open to the possibility of something else. Being grounded and secure in yourself doesn't come from being either right or wrong. It comes from feeling comfortable sitting in the space between those directions, with our hearts open. It is only in this open space that we can begin to communicate sincerely with both ourselves and others. Follow the Middle Way and be Just As You Are.