Percussion music tumbled onto the page. A rush of adrenaline of speed and force, bold and strong, exuberant, pounding rhythm, dancing soaring strings, and I could feel my heart beating with every stroke and note on the page, my son kicking, hearing the music too in the comfort of the warmth inside me and the world couldn’t be better.

The Spring of 2006 was full of music, things that needed wrapping up before the baby’s coming in May. He was conceived in July 2005 just after the London bus bombing which was near our home in central London and his approaching life held a sense of resolution and renewal after such terrible senseless carnage.

Composing was all-consuming and as I played lines and phrases jarring chords and heavy bass lines, I thought of how my baby listened and absorbed the music too. Water carries sound and I imagined him growing to know my music well.

When he was born on the night of a May full moon there was a heatwave in London. The darkness drew to a point of terror and his birth was hurried, tense and full of expectation. He cried and was content but all around there was a hushed distancing and avoidance of eyes and we knew that something wasn’t right. High up, I watched the red line of the hot sun seep into the dawn of a world that would be ever different.

My baby lay sleeping beside me, a perfectly beautiful little person unaware of how those around were already defining him. We were handed a creased photocopied booklet pulled from the back of a drawer, our first passport to the world of Down Syndrome. And so I read, that Down Syndrome meant that my son had an extra set of chromosomes, ‘Trisomy 21’. In those early days I held onto words. Perhaps the ‘extra’ in ‘extra chromosome’ meant something powerful as in superhero fantastic but not the extra that would upset the balance and disturb the norm. I avoided the preface of non as in ‘non neurotypical’, and with my husband began to traverse the landscape of fear, doubt and ignorance that labelled my baby as ‘genetically imperfect’.

Early on I looked at that pure gentle face with eyes so full of knowingness and certainty, I knew that his name was Ethan and that his journey through life would be extraordinary. We were told that he would not live long, that he would have heart problems, hearing loss, low muscle tone and speech delays and would be slow to walk. Ethan is now fifteen and is the most remarkable affirmation of life itself. He has a mild hearing loss, no heart problems and although he didn’t walk until he was five years old, he now gets around just fine. His reading is astonishing, and speech is good, if a little unorthodox. But he is gifted with the ability to write poetry that touches the very core in its simplicity and perception of detail.

That first year was an unending catapult of hospital appointments and therapy interventions whilst we still tried to separate from all this and just enjoy being parents. We discovered that Ethan also had an extra fragment of the Chromosome 14. Our paediatrician remarked that it was unclear how having this fragment would affect his extra chromosome 21 and that it could well have a positive effect as both chromosomes interacted with the rest. We held on to this quizzical observation as a ‘let’s wait and see’ how things turn out kind of thing because, from the beginning we cherished and respected Ethan’s right to his individuality and the right to be who he is whilst monitoring the developmental traits common to having Down Syndrome. But there was from the beginning a niggling about my lack of understanding of genetics and even more so at the lack of guidance from professionals to help me figure things out.

Developmental milestones for Ethan were significant as were my own milestones in asserting my son’s right to be included in mainstream education and to be offered the same opportunities as his ‘normal’ peers. So, there it is, the first time I refer to ‘normal’. This word has been used more times than I can remember in relation to Ethan, sometimes as a form of criticism, sometimes in pity and often as a judgement on what the world understands as perfection.

My creativity continued, parallel to my growing knowledge of the world of Down Syndrome and eventually coincided. When Ethan was six years old I received a Leverhulme Artist-in Residency at the Laboratory of Molecular Biology in Cambridge where with computational biologist Sarah Teichmann, I began to explore the science behind DNA ‘translating’ data into music resulting in the string quartet ‘Hearing Your Genes Evolve’. A central aim of our work together was to demystify the scientific principles behind genetics and make them more meaningful to a wider audience. As a composer this fulfilled me creatively and as a parent of a disabled child, I felt empowered in this newly acquired understanding about genetics and the implication for change as anomalies affect the function of the whole DNA. Knowledge gave me inspiration and also clarity.

In my music I used fragments of DNA patterns from the ‘1000 Genomes’ project. I set about creating musical dialogues between the four instruments in a string quartet, which represented variations in how the genetic code transforms and modifies as the components change. But how could I begin to do this in my music?

Taking data from a few pages of a DNA sequence I began exploring the common terms between the science and music and developed a language based on the letters in the base code amino acids ATCG. From these four letters I devised scale patterns which represented each base code. There are areas of overlap between music and science: repetition, replacement, switching material and looking at cells as patterns. DNA patterns repeat, are modified, letters switch, patterns copy and reorder. All these events happen in music also. The music in ‘Hearing Your Genes Evolve’ connects fundamentally to who we are and offer us explanation about how we grow as independent individuals. It has been a tremendous tool for me in explaining to Ethan the naturalness of difference.

‘Constellations’ inspired further development in my musical language rooted in a deeply emotional response. The poetic images are so readily connected to states of mind and emotional consequences. There is a kind of cathartic pathos for me watching the Wellcome Collection early film of the embryo dividing in a neat and predictable manner and there is an acceptance of how my Ethan evolved in an even more unique way. If that is possible and if we can believe this as a positive, the world will be a better place.