Christmas Eve 1989 we buried our second son Alan. He was just 22 months, no age for any child to leave this world. His little body had finally given up after 22 months struggling with the fallout from spina bifida. I carried his coffin up the aisle that day and the memory still haunts me in a way my facial disfigurement never did. Who expects to bury their own child, a beautiful boy whose life was blighted by illness, hospitals and disability?
It was a day we had expected and yet were hopelessly unprepared for. Who is? His final decline had begun months earlier and through those hours, days, weeks and months we died a little with him. The light in our lives was extinguished just like that of his own ravaged body. The 22 months of searing emotional pain for Trish and I, the agony of countless hospital trips, late nights at his bedside, rows between us over our own frustrations, the emergency calls to rush to Alan because he was believed to be close to death were no more. Instead we were left with a yawning chasm. Alan was dead, there would be no more chats with consultants, no more hospital visits to check on him, no more having to deal with Alan’s poor health. Instead we were left with our grief, and that’s another story.
There has never been a day since Alan’s birth I haven’t thought of him. Not one. His beautiful face is always before me even if his photographs aren’t in my wallet or at work. I could be enjoying a meal with my wife and friends, on holidays, at work, reading a paper, and I see him. I never want to forget him because his life broke my heart and taught me some valuable lessons about life and people.
Alan was our second child, born on February 10, 1988. It should have been a wonderful day, but instead it began a journey into the unknown, an unrelenting period of darkness that despite my extremely difficult experience dealing with facial disfigurement left me totally unprepared.
The birth itself went so quickly I was only dimly aware there was anything wrong. But within minutes it was obvious all was far from well. The gynaecologist told us Alan had spina bifida – I cursed myself for not knowing what the hell that was. Some journalist I was. There was something amiss with Alan’s spine was about as much sense as I could make of it. We awaited the arrival of a consultant paediatrician and the gynaecologist left muttering how sorry he was. Thanks buddy.
I had a quick check upstairs to see how Alan was and he looked just like any other baby, a cute little fella oblivious to what he had been born into. And then there was his back. I could make out some swelling but his back was covered so I wondered about his future without having the faintest idea about the issues we would have to contend with. And then the consultant arrived.
Mr Watson seemed a nice, friendly professional. It was obvious also that this was not a new conversation for him with parents of spina bifida (and cystic fibrosis as we discovered)
children. And he was very blunt about Alan’s chances; that there were many risks ahead, but that the likelihood of him surviving was low, and getting to adulthood would be even lower. All of which was predicated on Alan avoiding infection and hydrocephalus. So far there was no swelling of the head and while they would monitor Alan hopefully we could have him home in a week or so.
Trish, like myself, was woefully unprepared for Alan’s spina bifida. We had married just 10 months after we met, meaning we had little time to get to know one another before Daire arrived, and as everyone will tell you, that first baby lands like a hurricane, turning your world upside down. And just when we were coming to terms with Daire along came Alan. And the cycle of misery, dejection, heartbreak, rows, frustration – just about every emotion – was about to begin. Joy and laughter hardly got a look in over the next couple of years.
Alan spent his first few days in Erinville Maternity Hospital, Cork, before being transferred to the GD unit at Cork Regional Hospital. It was the start of a long and shattering journey.
Seven days later he was allowed home. On March 29 he was readmitted to the Regional suffering from loss of appetite and general listlessness. Within days his condition worsened. We were told that Alan’s chances were now 3 in 10.
Then he contracted meningitis. Miraculously he survived, but there seemed no way of avoiding further trouble. And there wasn’t. It was the start of a long, long nightmare. Here’s a flavour of notes I jotted down:
On May 4 his first shunt was put in.
May 16 Alan home.
Less than 36 hours later he was re-admitted.
May 20 another tube put in.
May 27 shunt out again.
June 3 another shunt
June 15 another shunt.
Our lives were torn asunder trying to cope. Trish and I turned on each other and rowed, borne out of frustration and my own inability to adapt. And I confess I found it very difficult. To me, Alan’s struggle mirrored my own as a child burns victim. I could see what my parents went through with me. How could this be happening to me, I thought after all I had been through. Selfish, very selfish thoughts for Alan was the person in danger, not me.
Visiting hospitals fill me with loathing, reviving my own bad memories of being a patient so often. And yet I had to see Alan. Some days I just couldn’t do it, couldn’t drop in to see his wasting body. I hated myself, my inability to do even a basic thing like calling to see him. Trish had days like that too. Sometimes, being on night work, I would drop into the hospital on my way home at 2am, to see him lying there asleep and I wondered how life would work out for him and us.
When he eventually came home we had to tube feed him, distressing for him and for us. Again it was a painful ritual, and there were times when I couldn’t get the technique right, or Alan knocked the tube away. Always, Trish and I were exhausted, mentally and physically from trying to attend to Alan’s needs and then Daire, and seeing consultants, talking to nurses, me dealing with work and the complications that brought. I have to acknowledge the tremendous support of my parents who were simply fantastic; sometimes they called on Alan themselves to give us a break, or brought us out for meals when we felt so crushed by Alan’s latest setbacks.
And on this went for what seemed like an eternity. Alan lurched from crisis to crisis. And we would be called out from wherever – home, restaurants, a dinner dance once. And every time Alan’s little body came through it, and sometimes he almost seemed to be laughing at our worried faces. It was hard for us not to smile in appreciation of his determination to live.
And then Trish became pregnant, and Sarah Jane arrived in June 1989, just months before Alan decided to stop feeding. Trish and my sister Lorraine had taken him to Lourdes, and the day they were due back he started crying. Well, Alan was the most placid child, so if he cried you just knew you had to drop everything and attend to him. He kept refusing his feeding tube and began to lose weight. He was eventually admitted to hospital, rallied a little, but then lost weight again and Mr Watson said this was the final battle. We wanted to ensure he wouldn’t suffer any more, and mercifully he didn’t. But it would be several more months.
On December 23 we arrived home at 3am after another harrowing vigil with our son, but hours later came another emergency call from the hospital, but he was gone before we got there, something I deeply regret as Trish had wanted to stay the night but I was concerned for her health at that stage.
And so my beautiful son is dead, but never ever forgotten. The aftermath and what we endured is for that book if I ever get there, but we celebrate his death every December 23 and Daire and Sarah Jane are always sure to be there for our family meal in a Cork restaurant. It’s our way as a family of honouring Alan. There are no tears. They have all been shed anyway. He is with us in our hearts and that’s a very special place to be.