An Unknown Ending By Dee Gordon
This wasn’t supposed to happen. Seeing my son for the first time, my first child, my belated child, my only child, should have been a tactile, warm experience. It shouldn’t have been fearful, wary, afraid to commit in case … in case. But it didn’t lack emotion. If anything, seeing him covered in tubes, in an intensive care incubator increased the emotion. I couldn’t pick him up, couldn’t kiss him, could only put a finger through one of the incubator’s holes to touch his cheek or his hand.
Of course I cried. Of course I did. Gut-wrenching sobs. What had I done? Look at him. A tube to feed him. A tube to help his breathing. Catheters. Measuring devices. I have never believed in God. And in that moment I knew I never would. I had done nothing to deserve this. And as for Ben - he had done even less. He had just been a product of my selfish belated desire to procreate, to prove I could do it, to prove I could do every bloody thing: look good, run a profitable business, laugh at the ageing process, ‘hold onto’ a man, live the good life.
A young registrar came over to see me. He looked so young but genuinely concerned. “He’s going to be all right Mrs G.”
He’s going to be all right. What he meant was that he was going to survive. In his eyes, that was enough. Was it enough? It had to be enough, because that’s all there was. Fistulas (joins) between the trachea and oesophagus that made swallowing impossible (anything swallowed went straight to the lungs) and feeding only possible through a tube, missing vertebrae, malformed arm and hand, twisted kidneys, bowel malfunction. This was the son I had dreamed of, planned for. The son who was going to be Einstein, or Bernard Cornwell, or Tom Cruise. Had all hope really gone?
I looked at the registrar and managed a smile, to cheer him up more than myself. “You mean he’s recovering well from his initial operation? So that is good news. It is. You’re right.”
How many more operations would there be in the future? How much more time would we be spending in hospital during his formative years? Hospitals were a whole new experience. I had only been in one before as a visitor when my dad had an ulcer. That was it. Me and my parents, we were as healthy as you could get. My mum was so pleased that they had lived long enough to see their only grandchild, and I had played down the range of Ben’s problems for her and dad’s benefit. They had come to see him and I think had been terrified by what they saw. But by reassuring them I managed to reassure myself. A bit.
“Is this an age thing doctor?” I had to ask, and I knew he was expecting the question. I thought I was being clever by delaying motherhood, waiting for my (second) marriage to settle, waiting for my body to recover from the smoking and drinking I indulged in pre-40.
“No.” His answer was prompt and unqualified.
“Look.” He pointed to the next incubator, where another small mite was clinging to life under the weight of plastic and tubing. “VATER Syndrome. Exactly the same condition as Ben. Her mother is seventeen.”
Did that make me feel better? I suppose it did, briefly. But it didn’t alter the fact that I knew that the older I was the more chances I was taking. But I’d had the scans, I’d had the amniocentesis, I’d had everything. And nothing, no trace, nothing was picked up. It was the shock I think that had the most powerful effect. Emergency Caesarean, and then Ben whisked away for surgery to London, while I recovered in my local hospital for a week until fit enough to travel by ambulance to see him.
I looked at my son again. He had hair, and long eyelashes under the sticky tape. He would have made a big difference in my hitherto self-centred life if he had been born well and strong. All children do that. As it was, the difference was bigger than I’d anticipated. I knew that Ben would need more than just love and care. I didn’t know that we would become a disabled family. No-one in our narrow world had any experience of disability, and that label made us different from them. It became, sadly, necessary to leave ‘their’ world behind and transfer time and allegiances to those who understood, who empathised, who had been there.
My mum had had me at 40, after having a still born son fifteen years earlier. And I had had a miscarriage a year before Ben. So it was unlikely that I’d go on to have another child. Ben would become my focus and my future.
“Do you want to hear about the prognosis?” I’m not sure I did.
“I don’t know. Is it good news?” Because if it was bad news …
I took a deep breath. “Well, I suppose I’d better hear it.” My husband had just come back from having yet another cup of tea and I smiled at him. “Prognosis time.” He pulled a face but it was too late, the registrar was talking, not that I took it all in. “Risk of scoliosis … ongoing bowel problems … developmental delay … kidney failure … operations … support groups … clinics … x-rays … tests … slow weight gain … learning how to swallow … long term feeding difficulties …problems … difficulties … occasional brain damage … but don’t worry (!), there is light at the end of the tunnel.”
“Stop it.” I’d heard enough. I could feel the tears returning. Hubby* was dumb struck, clinging to the bars on the incubator white-knuckled, looking down at his son, his second son, my first. This isn’t what he’d wanted either. Nobody wants to hear this. We shooed the doctor away. We weren’t ready. Whether we ever would be ready was, at that stage, debatable.
We clung to each other for a bit. If anyone could help Ben, it was us. Superwoman and Mr Laidback. Okay, so our priorities and materialistic lifestyle would have to change. Okay, so being financially sorted would be of absolutely no help at all. Okay, we had a lot to learn. But boy were we willing and able to learn. What did that young doctor know anyway?
If I’d known how long that tunnel was going to be before we saw any light, I might have felt less assertive. But assertiveness has been a godsend. It helped us through weeks of teaching Ben to take his milk by mouth - don’t give up, keep trying, you can do this, we can do this. Ignore the crying, the struggling. You can do this, we can do this.
Ben is now nearly thirty-three. That rocky start was followed by emergency surgery at 24 hours to separate the feeding and breathing tubes, bowel surgery at three weeks, weekly midnight visits to the local hospital to have excess mucus sucked out of his throat, the removal of his feeding tube at six months, surgery for collapsed trachea, for chronic reflux, to correct a twisted arm due to a missing radius, to correct undescended testes, for choleastoma … And further additional diagnoses: hearing loss (age three and a half), learning difficulties (four and a half), developmental delay and night time incontinence (age six), and – what is now his biggest problem – autism, at age nine.
This is Ben’s story. It doesn’t have a happy ending. Communication problems and comprehension problems are ongoing because of his autism. The physical stuff is now manageable and he can eat for England. But the worry is now his future – without me. No one is going to care the way I care, and there is no family out there – I am now widowed - only paid care which is never going to be the same.
There are regrets, especially about that decision thirty-two years ago, when no one warned me what could happen, when no one mentioned “disability” at ante-natal classes, when we were left as a family to get on with it. But that new world I learnt to inhabit, of support groups, disabled families, hospitalisation, social workers and special schools has been a world full of well meaning people, although only the disabled families have any idea how it really feels. As for Ben, he is happy with a screen in front of him – playstation, computer, DVD. Join in with the song: “Any screen will do”!
He may not show affection, but he has taught me a lot about love and life, patience and tolerance. While I’m around, I can inhabit that world of his. It’s just a pity he needs help to survive in the real world, a world very different to the one he inhabits – although not necessarily better.