Beyond A Mother's Love
Caring, Compassion & Amida's Light
by Kusumavarsa Dawn Hart
For any new Mum it is an overwhelming experience, this coupled with the sudden unexpected news you are also going to become a carer for a disabled child and life can seem like a fragile existence.
At 38 I had quite a settled life, after 6 years of trying for a baby I had pretty much all but given up, throwing myself in to my work as a therapist and writer. When I finally got my head out of the toilet bowl after weeks of morning sickness I discovered that my rather severe response to the pregnancy hormones was as a result of carrying twins. I remember the moment vividly, after a night in hospital hooked up to a drip due to dehydration and constant vomiting, I lay on a bed as the woman scanned my belly and there they were, two little blobs of life. I burst in to tears with a mixture of joy and fear.
Like most women who get pregnant later in life much of my world was sorted, I had a career path and children were just somehow going to fit in to that life. For most of the new mums who were pregnant at the same time as me, their healthy bouncing bundles have done exactly that. Career mums have gone back to work, while the children were placed in mainstream nursery care or looked after by young and energetic grandparents. My life has not been so simple, because I am no longer the person I was, I am a mother, but more than anything I am a Carer. But aren't they the same thing I hear you saying? No, they most definitely are not, on the days when you have to give medical care that is distressing both to your child and to you as a parent. When you have watched your child cling on to life time and time again while you inject life saving antibiotics in to their central line at 2 am, it is definitely not the same thing. I long for days when I can just play with my children, I grieve the moments with a new born baby that I never had. Every time I see a new mum feeding her baby I wish I had been able to do that with my daughter rather than feeding her through a tube in her nose.
My twins were born when I was 26 weeks pregnant. I found out the day after they were born that my son had received brain damage at some point before birth. A blood clot had cut off the supply of blood to the left frontal lobe. How he would progress in life was anyone's guess. I knew there and then that everything I had depended on in my life was gone. Ahead was a future of uncertainties. If there was going to be a time to test my faith as a Buddhist then this was it. All my fears around suffering, were there right in front of me. Everything I had read on my spiritual journey was about to be well and truly tested. I would like to say that life left the suffering I needed to deal with at that, but sadly life doesn't dish suffering out in bite size portions.
My daughter did not fair much better in this fight for life. I couldn't hold her for the first three weeks of her life, in fact by the time she was 3 months old I had only held her about a dozen times due to her fragile health. The bond I had felt with her in the womb felt like it had gone, the pain of not holding her was unbearable, someone might as well have ripped my heart out. She contracted Necrotising Enterocolitis two weeks after birth and had to have two bowel resections over the course of the next three months. We then later discovered that she also had a genetic condition that would affect her for the rest of her life. It took 14 months to get Grace well enough to come home, as she was dependent on an intravenous feed to keep her alive. I had visited her everyday in hospital, but was in the impossible situation of not being able to stay as I had her twin brother to care for too. Every time I left her bedside a little piece of me died.
I felt unbearable pain, the suffering of my children at times felt like it would break me. People would ask me how do you cope, what keeps you going? The answer, without any hesitation or question, was my faith in Amida Buddha. By the time the children arrived I had been on the Pureland Buddhist path for a few years and I was taking the tentative steps towards training as a Chaplain. You could argue that this whole experience has been the biggest lesson on Buddhism anyone could ever have, suffering like nothing else I had experienced before was there right in front of me. When I took the decision to take the aspirant path I had no idea, of course, what fate was ahead of me. I don't recall losing faith - even in the darkest hours, Amida’s Light was there, creating cracks of light in the darkness.
I chanted openly and silently to Amida Buddha and Quan Yin when ever I could. It felt like a thread of stability connecting my heart and mind to the Buddha, so as to keep me from going mad from the continual suffering that befell my family.
My husband and I tried to keep a roof over our heads and look after our sick children. We quickly realised we were pretty much in this alone as no one immediately offered us help. The intensity of seeing someone suffer, whether an adult or child, is too great for most people to handle. I think even some of my Buddhist friends who had sat and contemplated the nature of suffering found seeing a very sick child too much to bear. I remember one friend visiting my daughter in hospital and the look on her face I think summed up the general fear of everyone else around us. No one likes suffering, so if you don't look then some how it is not your problem. Take it from me, we are all only a moment away from it; someone else's suffering could be yours one day, we all grow old, we all get sick, we all die. As a Buddhist, I am so grateful for the teachings, and without my faith to hold me together I could not be a Carer, it is a lonely, exhausting job, only made better by the knowledge that you are helping to keep another beautiful human being alive. In a recent therapy session I expressed my anger that I am a Carer first and a Mother second. I carry the guilt of bringing children into this world who not only have suffered physically but whom will also have to grow up suffering the emotional hurt of engaging in a world that largely wishes disability did not exist. My therapist gave me a sharp reality check. 'Your children are happy though aren't they?' she said. I thought for a minute, and stopped crying as I remembered their beautiful, happy faces. 'Yes' I replied. In that moment I realised that, yes, there are times when I feel like giving up, yes, the Social Care system stinks and I am angry that my family does not get the help it needs, but despite it all my kids are happy. They have the love of two parents who have never left their bedside since they were born. When my son went in to respiratory arrest 6 days after coming home, I watched my husband give CPR, muttering in between breaths, 'You're staying with us, we are not giving up on you'. We are not giving up and we never will, but the fight is not easy.
As a Carer to a disabled child I have given up the life I had, I try to work a little, mostly to remind my self that I can be a version of my old self. I am not the same person, I grieve what I once had, and I grieve the life that I will never have. The life I have now would not be of my choosing, and I think any Carer would tell you that. I haven't had a full nights sleep in 4 years, my relationship with my husband is strained due to the pressures of looking after two disabled children. The financial pressures of being a Carer are immense, you give up work, cutting your household income in half. Carer's allowance is only designed for Carers who look after one disabled person and not two, and barely covers any living costs. With financial and emotional pressures and no ongoing support, disabled children can face a life time living in a single parent household, in poverty, with an exhausted parent; this is no life for any child. Only recently we took our children to a therapy centre where one of the staff pointed out that almost all the children that go there are from single parent families. The strain of caring for a disabled child is immense.
Being a Carer and not cracking up in the process, takes a lot of hard work. Cultivating a positive mind when it feels like the world is against you is a daily challenge. I am trying to be more compassionate to myself, an awareness of the concept of the Bombu nature helps enormously.
I may be a Carer for the rest of my life, only time will tell if my children will be able to live an independent life. In September 2014 they started school, this has given me more time for meditation and reflection, I am about to start volunteering as a Chaplain at a local hospice. I spend time trying to process what has happened, writing is great therapy, along with time spent in the company of Dharma Brothers and Sisters. My son, despite all he has been through, walks and talks, he is not without problems, but what he and his sister do have is faith! My faith has carried them this far, and I hope that they will always have the The Buddha in their hearts.
For all the ups and downs, the pain and the suffering of all of us, I can still see the beauty of this life every morning when I wake up my children. They are alive, for that I am truly grateful, I know that every day is precious. While the old me is merely a shadow, the new me is richer for the experiences I have had, even the painful ones. As a Buddhist I have a greater understanding of my faith through all that has happened and I am learning to live the life I have. I can't take the suffering away, but day by day I can learn to live with the scars I carry in my heart and mind in a way that does not crush me.
Motherhood may not have gone exactly to plan, but life rarely does, I have two beautiful children, life is different, life is hard, but it is also a life lived to the fullest, because I know that at any moment everything could change. Acceptance of change, and the impermanence of life are the hardest life lessons of all and a Carer receives those lessons a little harder than most.