Saturday, January 31, 2009

Our Little Miracle and The Power of Love

The world is blessed by the wonderful diversity of our brothers and sisters and this month there is a unique concert being held in Victoria, British Columbia, Canada to celebrate that love... On Valentine's Day! Come and join us at the Banquet of Love. I would love to see you there!

There seems to be nothing that love, genuine love, can't overcome - not a war, not racial tension, not unemployment and not embracing a new life changed by trauma, but still wonderful... Please extend a loving hand to friends and neighbours, especially those adjusting to trauma, when their need for us is so much greater...

This moving true-life story was written especially for ReBuildingYou by a dad. Not just any dad but a father who is one of the gentlest, kindest men. Like many men, this man keeps his feelings and emotions hidden deep in his soul and I'm touched and very grateful that he would be willing to share his story. A story that could well save one or two of the thousands of marriages and families that are overwhelmed every year by the demands and shock of physical and emotional trauma and the 'special needs demands' life sometimes asks of us.

Trauma has the emotions of veterans tied in knots - survivors and family and friends. Often so tightly that we fail to see the joyous parts of our lives - which are there despite the trauma we're reeling from... And the many, varied and beautiful gifts that diversity of every kind can bring... If we surrender to our circumstances, however awful they may seem, the richness of life can enter and soothe us and ease the difficulty. The world is blessed by the wonderful diversity of our brothers and sisters - people of different colour, sex, lifestyle choice, age, disability or any other 'difference' - and this week there is a unique concert being held in Victoria, British Columbia, Canada to celebrate that love... On Valentine's Day! Come and join us at the Banquet of Love. We would love to see you there! Julie

Our Little Miracle

by this week's guest blogger

In the beginning there was a dream, a dream of a happy, ordinary family with love, joy, birthday parties, Christmas’……… well happiness. You plan a family together and think how perfectly simple it will be. That is not always the case.

My partner and I enjoyed life; we travelled for many years and lived life the way we wanted to, at the time. At some point we decided to settle down and start a family. So, we planned. We first got the home, worked hard, so the mortgage would be manageable for me, while my wife stayed at home with our children. Rather old fashioned concept but that’s what we wanted.

When all the pieces were in place, a nice home, steady job etc. we tried for a baby. After 12 weeks of knowing my wife was pregnant the unimaginable happened. My wife had a miscarriage. We were both devastated but tried again………and again…..and again. All in all, a total of six miscarriages. Six babies lost, six tiny lives never to be lived. We were devastated. Tests were done; no reasons for this to happen were detected.

I had given up hope, my wife never did. Then one day she was pregnant again. I was in dread of what I thought would happen. As time drew toward the twelfth week, the time that the other babies had miscarried we were nervous wrecks. But things progressed along normally, the odd concern as the pregnancy progressed but nothing major.

The year was 1997; the worst snowfall to hit Victoria in 80 years and the baby’s due date was fast approaching. Now our concern was that we would be stranded and not be able to get to the hospital, 25 miles away. My wife told me we need to go now, so off we went, snow or no snow.

Four days of labour, no sleep for either of us. We spent our time talking about our soon to be born child; we listened to the joyous sounds coming from the adjacent rooms as other lives entered this world. Soon it became apparent that intervention would be needed. I was so happy that I was being part of this wonderful experience, the doctor asking me to assist with minor tasks, made me feel so much apart of the process and took the edge off my nervousness.

The moment had arrived our son was being born, the crown of his head showing. Out he came and was placed on his mother’s breast. No sounds of joy, hushed whispers from the doctor to the nurse, who rushed off. It still hadn’t dawned on me that something was wrong. My wife laying there stroking this tiny forehead, with a tenderness that only hinted at the love she had for this baby.

Shortly a paediatric doctor arrived and examined our newborn. He turned directly to my wife and I and said “your baby has Down syndrome”. My wife looked at me and said “I’m sorry” I burst into tears. Sad that our son had downs but sadder that my wife apologised.

Our child was now whisked away for a battery of tests to determine what congenital defects he may have. The next few days seemed a blur, not just from the shock or the exhaustion of four days of no sleep but an overwhelming sense of sadness, of loss. I loved our son with all my heart but knew from 10 years experience with mentally disabled people the immense challenges our son would have to face and we, as a family would also.

Fortunately our son was free from many of the congenital problems associated with Downs, heart problems, cleft pallet and a whole list of others.

Our lives went on, we loved and cared for our son, he did need regular hospital and doctor visits. At the age of 6 months our son developed unusual hyper-activity and accompanied by, almost startled expressions and movements. He was taken for check ups, nothing, he was taken to emergency, nothing. Finally I managed to come up with the idea of video taping these actions as the doctors could not diagnose without actually seeing them. Immediately our son was kept in hospital. He was now diagnosed with West Syndrome. It is a form of seizure activity which affects the part of the brain that regulates breathing and heart rate. This was a life threatening situation. After a week in hospital, which my wife never left, being at our son’s bedside all the time, we came home.

Several other severe illnesses threatened our son over the next few years. We 'coped' as a family. My wife was wonderful. She always knew what to do and how to deal with the, often, not so co-operative medical system.

One thing never occurred to me during this time. My wife and I were growing apart. Our opinions differed on almost everything, from my job, to who is responsible for what around the house, to money, to our son. Our lives had always seemed as one, we were always moving in the same direction, with common goals, we were for the most part very happy, or so I felt.

I think we were both so deep in our own sadness that we couldn’t see the suffering of the other and therefore didn’t give the support to each other that we so desperately needed. I remember having a re-occurring daydream in which our son had a parallel life. I could, so vividly, see our son being ‘normal’. He walked, talked, joked around, he had friends. But as the years passed so did the parallel life of my son, until it faded into nothing and I faced reality. Our son, at the age of 7, had poor cognitive reasoning, couldn’t talk, had poor balance walking, had no friends…………..

So the final phase of my grieving for the 'ordinary' son who had ‘died’ the moment Liam was born, had passed. My wife went through her own grieving, suffering that I have no knowledge of, as she has no knowledge of mine.

We have been separated and divorced for a number of years now. Our son is a wonderful, kind and compassionate soul, who I am very proud of. I love him very much.