18.1.85 – 12.3.15
“Someone I love has gone away,
And life is not the same.
The greatest gift that you can give
Is just to speak their name.
I need to hear the stories
And the tales of days gone past.
I need for you to understand
These memories must last.
We cannot make more memories
Since they’re no longer here.
So when you speak of them to me
It’s music to my ear.”
Our elder son was born on the 18th January 1985 in Exeter. He was five weeks premature, and was diagnosed with Pierre Robin Syndrome. He found life difficult right from the start. Later on he was labelled with Asperger Syndrome too.
Despite these drawbacks, he was an amazing young person, with a kind personality, a complex character, a huge knowledge of trivia, an astounding vocabulary and a wicked sense of humour.
He loved to travel the world with us and his younger brother. Whether it was sailing around Tobago, Bermuda or the Virgin Islands. Swimming with dolphins in the Florida Keys. Holidaying in Corfu, Switzerland, Hong Kong or Singapore. Snorkelling on the Barrier Reef or walking the sands of Magnetic Island or Bondi Beach. Rainforests and the snowy Australian Alps. And of course he loved America. From Chicago to Key West, Charleston to Daytona. Hilton Head and North Myrtle Beach were places he’d come to know very well. But it was in Orlando that he really had fun. The theme parks excited him so much, with their amazing variety of white knuckle rides. He loved Universal Studios, The Islands of Adventure, Sea World, Aquatica, The Magic Kingdom and DisneyWorld, Busch Gardens, Typhoon Lagoon; the list goes on and on.
As a family we were all in Florida for the turning of the millennium. We drove to Cocoa Beach, were sitting on the sand at 5am on New Year’s Day as the sun rose on the first day of the year 2000. An awe-inspiring experience.
His schooling was sometimes difficult, as he needed much extra help, but he made so many friends along the way. He really was such an individual character. He spent two years at school in Australia, then when we returned home he went to the local Junior School. At sixteen he went on to complete a three year course: Further Education Through Horsemanship, and stayed in the New Forest at a wonderful facility called the Fortune Centre. For the next ten years he spent time at Palace Farm in Devon, coming home throughout the year for weekends and longer holidays. There he continued with his horse riding, helped out in charity shops and had an assisted placement at a children’s nursery. He loved looking after the younger ones.
He was an avid reader and was rarely without one of his books. From He-Man and She-Ra, Thomas the Tank Engine, Star Trek or any Enid Blyton, to Greek legends and Indian mythology, the history of the native American people, to Homer’s Iliad, or the Three Musketeers by Alexandre Dumas. He loved the written word.
In his late teens he was taken to Lourdes, in France by the HCPT, to visit the shrine of Saint Bernadette. He went with a group of children with special needs, organised by the Royal Navy. To all accounts he had a wonderful time, even drinking his souvenir bottles of holy water in the hope of making him better, more normal.
St. Ives was his home, and he felt safe here. He would wander around visiting the bookstores and charity shops. Walking across the beaches and through the streets.
It was in September 2014, soon after we’d returned from our summer holiday in America, that he first went to hospital, complaining of a pain in his testicle. In October, following a biopsy, all was reported as being ok. But cancerous cells had been found, so a week later he had his testicle removed. And so we thought that was it. But during November he continued to have headaches and vomiting, and at the end of the month, he was found to have a brain tumour and further tumours in his lungs.
We were so scared and shocked. His 100 days of chemotherapy began on December 3rd. Sometimes there would be day case infusions, sometimes he would have to remain in hospital for six days at a time. Both my husband and I took it in turns to stay with him. He lost weight, and also his hair. He bore his treatment bravely, and half way through we were told the tumour in his brain had shrunk markedly. He was in hospital for Christmas morning and also for his 30th birthday. By the end of February he developed peripheral neuropathy, and found it hard to walk. He began to lose his appetite, and on two occasions had blood transfusions to boost him up.
Our son was not like other thirty year old men. He depended on us totally. He did not go off to college or university. He didn’t have a girlfriend, lover or wife. In the last few months he was our shadow. Everywhere we went, he came along too. Our constant companion. There was a comforting routine to his life. We looked after him, and he was protected in his own little world.