Prematurity Awareness day, 17 November

Our son was very prem. He was born at 31 weeks on a hot summer day while an excited London watched the Olympic torch near its final destination.

In fact, the torch went right past the hospital. While the procession streamed past, I sat beside my days-old son in his incubator, in a quiet, dim NICU, rendered extra quiet by the fact that there were only three babies on the unit, allowing most of the nurses to sidle apologetically out the door for a peek at the festivities. I watched them go.

I didn’t know then that this experience would summarise our lives for some time to come. This year’s hashtag for Prematurity Awareness Day is #PrematurityIs – and for me, prematurity is watching. Watching life go on around you in its multi-coloured hurly-burly, while you sit in a muted bubble of otherness.

Watching the consultants’ faces, to see if they believe the baby is going to make it out of you alive

Watching the clock in your own hospital ward, because they said they’d take you down to NICU at 4 o’clock to see your baby for the first time since the operating table three days ago

Watching your baby struggle to feed, and feeling utterly helpless in the face of an inadequate suck-swallow-breathe mechanism

Watching your baby sleep, and counting the seconds between breaths when he forgets to take one

Watching your baby’s face for a sign of recognition (I still hold in my heart the first time he really looked at me, and really smiled. It was a long wait.)

Watching the shock that others try to hide when they realise the tiny baby on your chest is actually four months old

Watching other parents discuss birth stories and developmental milestones

Watching other babies of the same actual age, because you can’t help making the comparison

And there was the unexpected watching, too. We were blessed with an energetic and determined child, right from the start. This was the baby who attained immediate celebrity status by stealing the thermometer during the APGAR tests and refusing to give it back – we have a photo of him determinedly clutching it. In the incubator, he would wriggle out of the lovely nest the nurses made for him, slide down to the end, and kick the glass until someone put him back, only to start the process again. He pulled out his monitor lines, so the staff sellotaped mittens to his hands. He got them off, and went back to removing the rage-inducing tubes. So I watched as my baby learned survival, in his own unique way; and I watched myself as I learned to admire his determination. Much later, this included walking at 10 months (8 months adjusted), so I watched both him as he toddled around a playground, and (out of the corner of my eye) the mothers who got to sit at a table and chat to each other as their babies slept or lay at their feet.

The watching continues, five years later. He is doing brilliantly. Like many prems, some things he does ahead of the curve, so we watch as he bounds on with ease; other things he does late, so the watching is more of a waiting game. But we have no doubt that he’s doing fine.

I have a soundtrack for those early days. I took my IPod with me into NICU, and played us music (through earphones nestled in his blankets, so as not to disturb anyone else). We both loved Schubert’s E flat Impromptu, which I had been practising during pregnancy; another favourite was Blackmore’s Night with Vagabond, which later we would dance to in the living room. Amy Beach’s Cradle Song of the Lonely Mother summed up the particular loneliness of the midnight watching.

And always, always Fanny Hensel, who shares the prematurity story. Her son, Sebastian, was born early on 16 June 1830. Both mother and child were dangerously ill; many feared they could not survive. But both pulled through, and by August Hensel writes of her new son as a “chubby, splendid, healthy boy.” Throughout her letters and diaries, however, as Sebastian grows, amidst the proud motherhood, one cannot help but feel the ever-present watchfulness, the underlying fear that something might yet go wrong. Hensel, too, was a prem mother for life.