In 2010 I submitted this story to the BBC who were running a short story competition entitled My Story. I entered this under their heading of ‘Achievement’. This was the first piece of writing that I had the confidence to share, and I remember it as being very difficult to write. I didn’t come close to winning but it felt like a personal achievement just the same. I hope that you enjoy it.

Howard’s story is almost my own.

His life and mine have been wound tightly around each other from the very beginning.

He is 28 years old, and he has Down’s syndrome. I am his mother. He has touched many lives and changed the course of mine forever. This is our story.

As a young woman of eighteen I was bright and ambitious with a place at university. I was however not smart enough to avoid an accidental pregnancy. Motherhood was not part of my plans, but I decided to have my baby alone and go to college after the birth.

News of my condition surprised everyone, but the pregnancy was uneventful. I was young and healthy and there were no indications that my unborn child had any difficulties.

I underwent the standard tests of the time and was waived through, but I had my own private anxieties and I voiced my concerns to my doctor. He dismissed them as those normal worries common to every first-time mother.

My son was set to be born to a woman quite unprepared for what lay ahead, who had only considered Down’s syndrome as a chromosomal disorder that affected children born to other, older mothers.

In fact, I wasn’t told of Howard’s condition until he was three weeks old. His birth had gone relatively smoothly but it was quickly recognised that my baby was in grave danger. He had been born with a rare condition. There was a gap between his upper and lower oesophagus meaning no food could reach his stomach and also a connection between the lower oesophagus and trachea allowing stomach acid to pass into his lungs. He was taken from me, only hours old, to Alder Hey hospital in Liverpool for life saving surgery.

The next time that I saw him was days later where he lay in the hush of the special care unit. Howard had tubes and wires connected to his body but was slumbering peacefully and I had my first opportunity to study my beautiful little boy. When I was finally allowed to hold him, I was bemused and awkward in my new role. I was young and unprepared for motherhood and the burden of responsibility for my sick child weighed heavily upon me.

Although I had no experience of children, I sensed that there was something else wrong with my son. During the days that followed his surgery I asked many questions, but the nursing staff seemed reluctant to tell me the reasons behind Howard’s sleepiness and difficulties with feeding.

Finally, I insisted that I meet with the surgeon. I sat facing him in his office, and he explained that their tests had uncovered a large heart defect. I was relieved. That could be repaired after all. But then he gave me the diagnosis that I hadn’t expected. My son also had Down’s syndrome. I returned to the ward and looked critically at my sleeping child. I couldn’t recognise him as my son, and I wept bitter tears for what should have been.

Against the wisdom of doctors who advised me to leave my disabled son in hospital and carry on with my life, Howard and I began our lives together. I was young, naive certainly but proud and full of hope.

I was fiercely loyal to my son and resilient enough to deal with the often-crippling effect of his poor health and frequent hospitalisation and the stigma and isolation of being the single mother of a Down’s syndrome child. I worked when I could and went onto college where I struggled with the demands of caring and studying.

Howard was almost constantly ill during his early years. His suffering was often unbearable to me and there were times when I felt the loss of my son would have been a relief to us all. At six years old he had his first open heart surgery. The prognosis was poor and while waiting for him to return from the operating theatre I walked aimlessly around the streets of Liverpool. Exhausted with worry I found my way to the cathedral where I sat alone in the shadows and wept.

A kind nurse once shared her philosophy with me when she said that children don’t know how to give up and always know when they are loved. Her wise words became my mantra as I watched over my son in those anxious days following his surgery and in the years that followed.

But Howard recovered, grew up and went to school. So did I. We moved to London where I graduated from college as a qualified teacher and managed somehow to balance the demands of work with caring for my boy.

Now my son is a man. He has had further heart surgery, and we have suffered many, many setbacks along the way. His health is still fragile, and he tires easily but I am humbled by his resilience and his optimism.

He finds writing difficult and can read only those words that are important to him, but he has just started his first job. He now has a sister and continues to enjoy the love and devotion of his grandparents who are so important to him. His gentle nature and impeccable manners endear him to many, and he is full of fun and brings life to every party.

Once, a lifetime ago, I felt ashamed when people peeped hopefully into my son’s pram and then looked quickly away when they recognised his disability. But now I am proud to introduce Howard as my son. But he is much more than that. He is also my friend, and he has grown alongside me almost as a brother would. He can make me laugh out loud and can break my heart just as easily. His is the biggest and best success story that I will every read. He made it through. We both did.