Hoping for the Best
You sit on the edge of your chair, distracted by a photo on his desk; a boy and a girl, aged eight, or thereabouts, dressed in identical, bright red sweatshirts. Eloise’s birth had been so straightforward from start to finish, thank goodness; refugees, as both of you were, of two failed marriages apiece. In the ensuing years, they thought you crazy to keep on trying for another, but for Eloise’s sake you did. The premise she should be denied a playmate, a companion, was unthinkable. Didn’t you always have two of everything – two cats, two goldfish...two rabbits? The years went by though, and gradually you gave up hope of ever conceiving again.
“Probably for the best,” friends concluded. “How could you contemplate nappies, sleepless nights?” they asked. “You’d be drawing your pension before he or she had even left school. Can you imagine that?”
Oh, but you could. You’ve thought of nothing else for ten years or so; even considered fertility treatment, except Robin was less than enthusiastic.
“Let nature take its course,” he’d said. And it did; finally. You are expecting your second child. You wanted to tell the world; the universe no less...until your last visit to the ante-natal clinic, when your worst fears were confirmed.
“Well then, Mr. and Mrs. Daniels, I have to say I am so dreadfully sorry. One in every hundred babies born to woman between the ages of forty and forty-five has Down’s Syndrome, of this I am sure you were aware. I hasten to add, often, as would seem to be the case here, the desire for a child far outweighs any such risk. Looking again, at the same set of statistics, ninety-nine babies out of a hundred are perfectly normal, so there is no reason for either of you to feel any sense of guilt – whatever the outcome.”
You tell them, ‘Yes’, you were fully aware of the facts and had no intention of going on a guilt trip; your feet, firmly planted on terra firma. Like hell they were. You were terrified, if the truth be known, and you did blame yourself. After all, what had it become, in the end? A race to beat the menopause – prove your fertility, your womanhood; not content with the perfection you already had in Eloise.
And so you nod – give a half-smile in polite response, as they inform you your baby has what is known as the ‘Mosaic’ type of Down’s syndrome; one of the ‘more fortunate’ two percent, which tends to result in milder features than other forms of the condition. In conclusion, they say, in case you were wondering, that the amniocentesis result proved the condition definitively. There was no mistake, no margin of error. They ask if you would like to know your unborn child’s sex.
“No,” you say, in simultaneous response.
You bite your lip; glance across at Robin. He bites his; glances at you.
You ask them where you go from here, pre-empting their answer. It’s time to make the decision as to whether or not you want the baby; ‘or not’, simply meant opting for an abortion. Why didn’t they just say it? Absentmindedly, your hand traces the outline of your rounded tummy. Can he hear all this, you wonder? Would he want to be born if he could envisage his future? And even if he did, could you cope? What sort of life would you have? There is no wrong or right decision, they reassure you. Only a question of what is right for you as a family. If you do decide on an abortion they will make all the necessary arrangements and provide you with counselling.
You are just leaving. They shake your hand and give you a leaflet produced by The Down’s Syndrome Association. You find yourself, of all things, saying, ‘Thank you’.
On the way back in the car, the rush-hour traffic is horrendous; Staples Corner at four-thirty in the afternoon.
“So bloody unfair, isn’t it Robin?”
“I know, love,” he replies. “We’ll talk about it – later. Detest driving around town at this hour – masses of school kids everywhere. Look at that one; on and off the bloody kerb all the while!” Look...you do know, don’t you, Susanna, I’m OK with whatever you decide? At the end of the day, you are the one who is most affected. Only you can know what the right thing to do is....for all of us.”
The right thing for whom, though? Yourself, Robin, Eloise, the baby...the child...the adolescent...the man – trapped inside a mind and a body he’ll probably despise.
That evening you spend at the computer, researching Down’s syndrome. What actually is it anyway? You’ve never really known; the kind of thing happens to other people’s families – not yours.
‘Down’s syndrome is a genetic condition known as trisomy, where a person inherits an extra copy of one chromosome, resulting in three copies of chromosome twenty-one, rather than the normal two’, you read out loud from the screen.
What in heaven’s name does ‘chromosome twenty-one’ mean? You read on, hoping to be enlightened.
‘People with Down’s tend to be shorter than average, with poor muscle tone, and have short, broad hands with a single crease across the palm.’
Your hand instinctively rests on your tummy. You look down, turn it palm upwards and try to imagine his. You look back at the screen.
‘Downs syndrome affects around one in a thousand babies born in the UK, approximately six hundred babies a year, and is the most common cause of learning disability. Most affected children are usually happy, and extremely affectionate however, and some live well into adulthood … There is no cure for Downs … Some need full-time care …’
You wish you could get off this roller-coaster, as a wave of nausea engulfs you; ‘chromosome twenty-one’, still puzzling you, as you finally throw up. In your head, you keep going over old ground. If you do decide to let this pregnancy run its course – have the child, wouldn’t that be selfish? On the other hand, do you have the right to play God? Could you go through with it anyway? You’d always been against abortion, full-stop! You ask yourself why you persist in calling this child a ‘he’? A rhetorical question, though. You know as sure as your desire to become pregnant, this child inside you is a boy, just like you knew Eloise was a girl. Each time you closed your eyes, before she was born, you could see her, in every detail as she is now, the image of you. In the same way you can see him, dark brown, corkscrew hair, the image of his father. Speaking of which, Robin was the proverbial ‘brick’. He couldn’t give a damn whether it was a boy or a girl. Simply wanted it to be fit and healthy; what he said about Eloise before she was born and what he’d said about this one in the early days.
And then there were people in general. Everyone avoids you. Embarrassment, you suppose; hurtful nonetheless. You get used to the fact no one phones for a chat anymore...to seeing neighbours crossing to the other side of the street when they catch sight of you. Amazing how quickly bad news spreads.
What Eloise feels about the baby, you’re uncertain. She was over the moon when you first became pregnant; couldn’t wait to have a baby brother or sister, now she changes the subject whenever you bring it up. You’ve noticed she’s even stopped gently patting your tummy, pretending to talk to him. Maybe he could even hear her. In that case he would be missing it too. For the umpteenth time, you remind yourself to stop calling it a ‘he’. ‘It’ is a sixteen week foetus. ‘It’ is devoid of feeling.
You briefly open the spare-room door. It’s uncluttered, comparatively empty. You had such visions for it; the cot you’d set your heart on you’d seen in John Lewis, positioned just beneath the window. Lemon, the walls would be, with lime green curtains. That way it wouldn’t matter whether it was a boy, or a girl.
Downstairs, you hear the phone ring. You jump out of the shower, crack open the bathroom door. Something is wrong. Robin is sitting on the bottom stair. Towel wrapped around you, you listen.
“I see … I see. When will you know? You must be able to give us some idea, for Christ’s sake! I’m sorry. It’s just… I see. I understand. No … I realise you can’t tell me more; not over the phone. We’re on our way, but before we get there, tell her … tell her Mummy and Daddy will be there very soon and … tell her we love her."
“It’s Eloise, isn’t it?” you ask. “Please tell me I’m wrong,” you say – another rhetorical question. She’d planned to go to a friend’s house after school; some kind of Geography project they were working on. You hear Robin telling you she was crossing the road. You picture it in your mind. The school bus always stops in the same place; right outside the fish and chop shop – double yellow lines, but drivers ignored them, the stupid bastards. You and some other parents had voiced your concerns to the headmaster; always maintained there’d be an accident, one day...
“Your daughter ran out from behind a bus, Mrs. Daniels. The driver is in custody, so I’m informed, but the police will obviously be in touch. Apparently, so witnesses say, the car that hit her appeared to have been going comparatively slowly, but he simply didn’t see her until the last minute,” they tell you at the hospital. “She would seem to have fairly superficial injuries. Except, when she fell, she took a rather nasty blow to her head and it’s this which is giving us cause for concern.”
They tell you not to be alarmed at the daunting array of equipment surrounding her. ‘It’s all perfectly standard procedure; for someone admitted to the high dependency unit, so they can monitor her carefully and maintain necessary fluid intake and so on, whilst she is unconscious.’
You ask, “You mean … she’s on a life-support machine?”
“Yes,” they tell you, “But don’t be unduly concerned. Her life would appear to be in no immediate danger but as I have explained, at this stage we cannot be sure what the extent of the damage to her brain will be.”
But you are concerned. Concerned? You are half out of your mind! You try to convince yourself this really is your daughter; head swathed in bandages, tubes and wires invading her body... The same daughter, never tired of ‘Under Plum Lake’, a book she never grew out of; the one you’ve read to her most every bedtime since the year dot. You have it with you now – hastily stuffed it in your bag before you left home this evening. A heart monitor bleeps reassuringly at you. You understand its message. At least she is alive. At the most she is alive.
‘The first twenty-fours are critical’, their voices echoing round your head. They tell you they may have to operate to alleviate the pressure of the fluid on the brain. There may be some permanent speech or memory loss – impairment of movement. Tell you to ‘prepare yourself’. They tell you they’re doing all they can. They don’t tell you what you’re supposed to do...
Except, “Try and get a couple of hours sleep. Along the corridor is a room with a couple of settees you can maybe stretch out on. I can understand you don’t want to leave your daughter’s side and one of you should be here – in case she regains consciousness. It’s important for her to be stimulated by familiar faces and so on, to encourage her brain to start functioning again normally – give it a kind of kick start.”
You exchange a brief glance, and it’s understood you both will sit it out – however long it takes.
You feel a fluttering inside you.
“What’s wrong, Susanna?” Robin asks.
“Only the baby; making its presence felt. Here – can you feel?” his hand, warm, comforting.
“Yes, yes I can; probably fancies himself as David Beckham – poor little blighter. Shit! That was so thoughtless. I keep forgetting it’s only an ‘it’, at the moment.”
“No. It wasn’t your fault, Robin. He is as real to me as he is to you, and I’m his life-support machine, and I can’t ‘switch it off’ any more than I could Eloise’s…And, by the way, David is a good name. Wouldn’t you agree, Eloise?”
“I know it’s late,” you tell her, “way past your bedtime and all that, but maybe just a page or two, before I say goodnight.” You swear she can hear you.
You begin to read. You don’t need the book, though. You know it by heart. So does she.
“I want to buy a Ragusa and fly on my kite above *Plum Lake. I want to go to a pleasure-dome and I want to be a fish and want to visit the Abyss, even though I know I’d be scared as Barry.
I want to lick a sweet …”
“that turns my mouth into a cathedral,” you can hear her say...you swear you can.
You take hold of her hand – so small, so perfect. You marvel at her long, dark eyelashes, move a stray lock of hair that falls across her face. You look up at Robin as he buries his face in his hands and quietly sobs. You have no decision about the baby to make. Not now. It has been made for you. You will go on hoping for the best, because at the end of the day, you can’t hope for more.
* An extract from ‘Under Plum Lake’ written by Lionel Davidson.