The apneoa alarm went off in the early hours of the morning.
It had been a while since we’d had a false alarm but they weren’t unusual.
I turned on the light, glanced at Tom who looked as he normally did, reset the alarm and was about to get back into bed when I remembered the nurse who’d taught us CPR saying. “don’t just rely on the machine, use your senses too”. As I turned to check Tom more carefully the alarm sounded again.
This was for real. He had stopped breathing.
I pulled him out of his cradle and began CPR while my farmer rang for help.
The first to arrive was our neighbour who’s a nurse, then our GP who took over the CPR and finally the ambulance.
My farmer and I watched and waited for what seemed a very long time. Just as I was about to ask if it was worth continuing, Tom started breathing again.
Once it was certain he was stable he was taken by ambulance to hospital in Oamaru. We followed and were greeted by a doctor who recorded Tom’s history then asked us how aggressive we wanted them to be in treating him.
It was just a month since we’d been told he had a degenerative brain disorder, was unlikely to live long and if he did he’d be profoundly disabled.
My farmer and I hadn’t discussed what we’d do if something like this happened. However, we agreed that if Tom was fighting for himself he should be given any help he needed but if it came down to treatment which was only prolonging the inevitable without giving him quality of life they should let him be.
The doctor said he thought that was the right decision but there was little they could do for him here and he’d be better with the specialist peadiatric team in Dunedin.
I accompanied Tom in the ambulance, went through the familiar admission process in Dunedin Hospital where he’d been a patient many times, then watched and waited while the doctors and nurses tried to help him.
Finally the senior doctor turned to me and asked the same question we’d been asked in Oamaru. I gave the same answer. He nodded and said they’d done all they could and would I like to hold Tom.
A few minutes later he died.
My farmer arrived soon after.
All the doctors and nurses who’d looked after Tom came to say goodbye to him and comfort us. Among them was a Fijian registrar who said we all make a fuss about welcoming people, it is just as important to farewell them properly.
That was September 9th, 1987.
I don’t always remember the anniversary but today, 25 years on, I’ve been thinking of Tom – a little of what might have been had he lived and a lot of what has been since he died.
No-one asks to join the bereaved parents’ club, the death of a child is against the natural order of things and we don’t expect to outlive our children.
But it isn’t all bad. The deaths of Tom, and seven years later, his younger brother Dan, changed our family and our lives for worse and for better.
A lot of people say they couldn’t cope with what we’ve gone through but few if any go through life untouched by challenges and when faced with them there’s not a lot of choice. If you don’t cope you go to pieces there isn’t any middle ground.
That doesn’t mean we always coped well and there will always be sadness that the sons we loved, lived such a short time – Tom 20 weeks and Dan five years.
But their lives weren’t worthless and it would be throwing away the lessons they taught us if we wasted our lives mourning their deaths and not making the most of opportunities they couldn’t have.
They taught us how fortunate we are to have the love and support of our wider family and friends, that life is precious and that has added to the joy and excitement of the arrival of the next generation.
In the last couple of years we’ve welcomed the birth of an Argentinean grandchild, three great nephews, two great nieces and another great-baby is due this month.
When I look at them I am reminded that life goes on and love endures.