Sasha Barton
15th July 2002 - 23rd April 2003
By Giles and Tiziana Barton
As Sasha's parents, we would like to present this piece of writing as a tribute in memory of her life, and to share with others a personal view of what her life means to us. We also hope that other parents affected by SMA can derive some strength and hope from our own experience in the way that we have been helped by reading about the experiences of others. What follows is a modified transcription of the original tribute read at Sasha's funeral.
We knew from the start that Sasha was very special and connected to us personally when she was born with her eyes wide open, on her mother's birthday, and gave us her first smile when she was only two weeks old. It was her beautiful eyes and her bright, ever present smile that were to become such a source of joy to anyone who knew her. She had a presence which automatically drew people in, and a peaceful, accepting stillness about her, and such was the power of this presence that no-one really noticed until the last months of her life that she could barely move.
She never displayed any of the grossness or narcissism which is quite normal for babies her age, and neither was she ever particularly interested in toys. What she always wanted more than anything was to be with people, and in particular to be held; in fact the only thing she ever really got upset about was being left alone. We were amazed at how she was able to spend an entire evening in the company of people, sitting quietly observing, smiling and gurgling, like a little baby Buddha on her throne.
Her extraordinary awareness was also evident when, for example, we would be in the middle of a heated discussion or argument and we would turn to Sasha who would be staring at the both of us with a look of such intensity that suggested she understood everything that was passing between us. She also had a knowing and rather wicked sense of humour; Tiziana will always remember how, at the post-natal classes, while many of the other babies would be crying and yelling, Sasha would be quietly chuckling away at them all, as if wondering what all the fuss was about. It also makes us laugh to recall how, despite her condition, she never really had any problem with muscular weakness when it came to breaking wind, which she was able to do with some force, and which seemed to amuse her as much as it did us.
We feel very blessed that after Sasha's first illness, when SMA Type I was initially diagnosed, she was able to return home with us for a time. Although the news of her condition was at first devastating, we soon understood that we needed to make the most of whatever time we had left with her, and tried to do the best we could with the limitations brought about by her situation. She loved being taken out in the buggy for walks through the trees, and we often played the guitar and sang to her. From a very early age, bath time had always been the highlight of her day, and this became a special time for us, when she would recline in her little plastic bath chair, surrounded by floating toys, and the reduced gravity of the water allowed her a freedom of movement she was unable to experience at any other time. She also adored going to sleep in our bed, with her mummy and daddy at either side of her.
We had a wonderful few days in Cornwall with her, where we took her to the beach and showed her the sea. We also took her to visit people when we could, and we are sorry to this day about the people who didn't get to meet her; we truly believed that she would stay for longer, at least for the summer while the weather was warmer, which we hoped would reduce the risk of any further illness.
We are grateful that Sasha had the opportunity to say her last goodbyes to her Italian family. Her grandparents, together with her Uncle Massimo, Aunt Eleonora and her little cousin Giorgia came over from Italy during the Easter weekend, and we are thankful for those precious moments which will stay in our hearts forever.
Within hours of the family's departure on Easter Monday, Sasha became ill again and was taken to hospital for the last time. The moment we had known would come had finally arrived. When she finally passed away in our arms it was the most painful of moments, but at the same time we experienced a deep sense of beauty, stillness and peace that words cannot describe, and this has changed us forever.
We would like at this point to thank and acknowledge Anita and all at the Jennifer Trust for giving us valuable information and support when we needed it most, and the NHS for the extraordinary care that Sasha was given, by the doctors and nurses while in hospital and health visitors while at home. We are particularly grateful to the care we all received at St Mary's, Paddington, where Sasha stayed on her last visit to hospital. Previously, despite the high level of practical care Sasha was given, we had felt quite abandoned emotionally by the doctors themselves, but our faith in doctors was restored at St Mary's where we were supported from beginning to end without exception, no more so than by a wonderful doctor named Bettina, whose strength and compassion was a great source of comfort, and who sat with us, holding Tiziana's hand through those final, agonising moments.
A lot of people feel that what has happened to us is very cruel and unjust. Instead, we feel that Sasha was, and is, a gift from God, and although her nine months of life may seem very short by normal standards, for us it has been full of purpose and meaning. When the full extent of Sasha's condition was first coming to light, we both had a strong sense that our whole lives had been leading up to this point. We believe that the pain of what has happened is the pain that we have carried inside us all this time, and we are being given the opportunity through experiencing it, to heal it and transform our lives in the process.
We both feel that Sasha is a soul of great purity who, like a beautiful butterfly was only destined to be here a short while. Towards the end we no longer felt like her parents, instead we felt very strongly that it was she who was teaching us. The both of us have always felt quite otherworldly, like we didn't belong on this earth. Sasha has taught us the importance of living in the present, of coming fully into life and the best way we can honour her life is by changing ours in the way we know she intended.
We thank God for this wonderful gift, and we thank you Sasha, for coming to us. Though we miss you more than we can say, we are slowly learning to live without your physical presence. Through witnessing and experiencing your light we have learned that it is a reflection of our own light, and we will honour you by doing our best to shine in the way we were shining with you, and we will remind the people who knew you, and others of your great spirit. Together we wish you well on your soul journey, knowing that when it is meant to be, we can be together again.
You are the child, the essence we have always longed for, and our lives are now richer and more complete in the knowledge of your existence. You are the key to our hearts and you have opened them like no other, and we love you forever, our beautiful Angel, Sasha.
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