My son’s story

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.

296 responses »

  6. Thank you for visiting my blog and liking my post. I am so sorry for the loss of your son. What is his name? My friend Jim died from brain cancer in April, 2012–it was a difficult journey, and I still miss him terribly. I hold you in my heart.

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  9. Bless you. As short as his life was and his loss so tragic, your love for him is incredible. To be loved and to know that love and to love is such a special thing. It does undo the adversity he lived through or your loss but it’s a powerful testimony to those too busy or coasting through life to appreciate what they have. I have been living with a severe life-threatening auto-immune disease for almost 10 years and have young kids and the pain of thinking I’m going to leave them behind has been so intense and yet I’ve risen from the ashes. I cling to the preciousness of life and my family. Well, I try to. I still have to live my life and do my writing.
    Love to you!
    Rowena

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  10. Clearly your son was both gifted (having that wonderfully specific genius I’ve seen in my family and friends with Asperger’s) and a gift, being such a loving and life-affirming boy and man. May you and your family always be comforted by his presence in your hearts. I feel fortunate to know even this little bit of his story; the world is richer for his having graced it for 30 years.
    Yours,
    Kathryn

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  13. Thank you for visiting my page and reading my story. Losing a child creates difficult journey to unfold before us. Your love for Frank is evident and I am so sorry for his loss. He saw more in his 30 years than many see in an entire lifetime. I love that he was you & your husbands shadow and constant companion. What love you had for him. May you find comfort in knowing that you were there for Frank and that he is at peace. Blessings to you, Denise

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  15. First of all, Thank You for following my blog. I just read this and with tears in my eyes I am writing you to tell you WOW this is beautiful and I am so sorry for your loss. My thoughts and prayers are with you and your family. I look forward to getting to know you through the words you write. Take care my new friend~Your love for him, so profound… I have chills and this is worth the read, Thank YOU.

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    • Thank you very much for saying so.
      We were fortunate to travel as we did, and show both boys many different parts of the world.
      Yes, we have many, many wonderful memories of our times with Frank.
      A very special young man.
      x

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  22. As a mother of six, my heart truly goes out to you, and I can understand what you mean about savouring the memories you had of happy times with your son. He sounds like a brave and loving person and he would have known how much he was loved, I see from you header that you are also suffering and can only send my very best wishes that your treatment works well. Millie

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  25. Thank you for sharing this. I really don’t know what to say but to say I’m sorry for your loss. He sounded like a lovely young man, and I’m glad to know that he was an avid reader, and loved the written word. ā¤

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    • Thank you so much.
      Frank was a lovely young man: complicated, challenging and so caring and loving too.
      He amassed a huge collection of a variety of different books. He really did enjoy his reading.
      x

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  26. In a world that can be cold and cruel, your son was so very blessed to have such a loving family
    that chose to and was able to take care of him. I know you feel blessed, too, for having the gift of 30 years with such a remarkable young man. And now he has no pain; he isn’t lonely, nor sad.
    You made his life on earth the very best it could be. I know there is joy in your heart each time you think of him at peace even as the pain of your loss threatens to overwhelm. Your son’s story touches me deeply. Thank you for sharing it.

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    • Thank you so very much for your lovely words and kind understanding.
      Made me stop and reflect for a while.
      Smiles and tears often happen together. There are so many wonderful memories, but we miss him oh so much.
      xx

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  28. Tears fill my eyes and my heart aches for you as I read this. We are close to the same age, and I have a son who is almost 31. He has had always been an “outside the box” rebel and I’ve wondered if he has a touch of autism. He still loves animals and Star Trek. I have imagined the loss of my children, both of whom have mental health challenges, though try not to dwell on it of course. Thank you for sharing your son’s story, and your story. You have helped me to remember to treasure what ever time we have with those we love. I send you thoughts and hopes of the peace and prayers of comfort.

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  30. Bless you brave Mom and woman. I think you are doing a great service with your blog, yesterday I watched your video, though I can’t find it today, you holding up signs. I learned so much from it, Thank you for caring enough to send your message out to us. Much love!

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  33. Thank you for sharing your son’s story. He had a beautiful 30 years of life. He was content just being with you. He had traveled to some places I have never been. He was loved, protected, and cared for. You and your family had given him the most joy in his 30 full years of life. He is no longer suffering, struggling of falling behind or any other discomfort that he had. He is free, totally free at last. We will meet him one day and see his perfect body in the Father’s hand. Bless your eighty-one weeks +. May his comfort continue to be with you and your family.

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  35. Oh my dear, my heart has squeezed in my chest by reading this. I have known so much pain but right now I feel yours is more than mine. You have immense strength and patience to go through it all. I am so sorry for your loss. But with this blog you have honoured his memory. šŸ˜ŠšŸ™

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  36. What an absolute heartbreak you’ve been through. Just watched your video here. An acquaintance almost lost her son to testicular cancer a year or two ago. His battle was very scary, but he made it. Here in the US, my son’s pediatrician checks his testicles as part of his annual exam. I’ll be sure to have my son check himself regularly.

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  38. I came over here after you posted on my birthday blog post, when you mentioned it would have been your son (Frank’s) birthday today. And I read your tribute to him and fell in love with a wonderful young man. My heart goes out to you on your loss of him. I’ve lost many people I love, both parents, both sisters, and most recently a nephew. But still I cannot empathize with the loss of a son. So I wish you smiles with the tears I know must be falling. And peace.

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    • Thank you so very much for your wonderful words and message of support. It is appreciated.
      You too, have had a difficult time, and I can’t imagine how you get through your days sometimes. Sending lots of love and hugs to you.
      Melanie x

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  44. I’m so sorry for your loss . . . that is a beautiful beauty full poem, may your memories of precious moments shared together give you peace and joy anew.

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  46. I am so sorry about your son. We almost lost our grandchild to a brain tumor when he was two. He had chemo and stem cell and somehow survived. Fourteen years later his mother died of cancer. Cancer is one of the most horrible things in the world. You would figure that by now we would have this beast licked. I am going to reprint the experience on the blog now.

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    • Thank you for your kind words.
      So very sorry about your family’s journeys with cancer.
      It truly is an absolutelyā€‹ heartbreaking disease, and oneā€‹ that I hate with a vengeance.
      Take good care.
      x šŸ‘¼ x

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  49. Dear Melanie,
    This was heartbreaking to read. I am so very sorry about your wonderful son. You must miss him terribly. I canā€™t imagine that words on paper could convey adequate compassion but please know that I feel deeply for another mother; after all, love like this is universal.

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