I Took My Baby Home

I took my baby home. Fiona said his head was a perfect shape. Father said “If it ain't broke, don't fix it”. But it was broke. We saw the paediatric consultant. He explained that our son may have Sturge Webber Syndrome. The birthmark on his face could be on his brain. “Epilepsy,” he said, and I remembered Nigel at college, that time he stood up in the canteen and then crashed to the floor twitching.

A brain scan was organised. Mother came with me and the baby. They gave him a mild anaesthetic. He went limp and floppy. Afterwards they said they would write to us. I did not want to get the letter. I wished to remain ignorant. You can dream in bliss. Once you know, you know, everything is settled. I did not want to be finalised.

Two days before Christmas I telephoned the hospital. “Please, you said you would write and we still have not received a letter.” I listened to muzak while the medical secretary took a look. I stroked my hand along the top of the windowsill. I should dust more often. The garden needed tidying up. Green stains had appeared on the red slide. The grass could do with trimming around the empty flower beds.
“It'll be in the post tonight,” she eventually said.

I made the dinner, something with potatoes I expect. I did the dishes, wearing yellow, rubber gloves I expect. I helped my daughter on her potty. I changed my son's nappy. I cradled him in my arms after his bath, like I always did, and sang, like I always did. “You are my sunshine, my only sunshine. You make me happy when skies are grey. You'll never know dear, how much I love you. Please don't take your sunshine away.” He smiled. I did not have happy in me. I looked at him and stroked baby oil into his skin, over his shoulders, down his arms. “You're beautiful. I love you.” I said it again and again. I thought maybe my positives could seep into him like the oil. I never did that for my daughter.

Matt continued at college. His results were good. Mother was frightened of the new baby. She worried that he would 'take bad' on her watch. I found this strange. She had been a nurse for years and years. Why could she not trust herself to look after him. I desperately wanted her to, so I could get a break. She remained adamant.

I went to night school, twice a week, and studied law. Because of the way my brain works, I found it easier to deal in absolutes. With law it either is or is not. There is no need to compare or contrast. I am hopeless with questions that ask me to abstract. My favourite film quote is when Walken gets out of the car in “The Deer Hunter” and says “This is this.” He is flinging his arms out to survey the scenery. But he is right. This is this. There cannot be anything else. When I was younger I did not understand the term not being able to see the wood for the trees. I thought this literally meant that I could not see the wood, because the bark of the trees was getting in the way. I did not realise that it referred to the ability to stand back, and consider more than the individual, the bigger picture. Sometimes, I am lost in what people say.

The next morning I was expecting the letter, the one the secretary promised. I got up early. Sitting in the kitchen my ears strained to hear the sound of the letter box, when the postman shoves the things through the door and the metal rattles. It went, rat-a-tat-tat. I ran to the door. No mail. Again. It was 7.00am. “It's me.” It was my best friend, Bags. “Let us in then.” There was only one of him, but in Birmingham we make ourselves bigger my pluralising every issue.

At the table we drank coffee. Cereal boxes stood erect. My daughter shovelled food into her mouth. My stomach did not feel like it wanted anything in it. There was acid. Occasionally it bubbled up into my throat. I don't like being sick in my own mouth.

I heard them and imagined them all at the same time. A gentle whoosh as they pressed themselves into my house. Whiteness and manilla. Enveloping, but not in comfort. Truth arrives in the morning, along with junk, the two lying next to each other, in a perverse familiarity.

The letter from the hospital was immediately recognisable. I opened it the way I always do. Using the nail of my left thumb to roughly tear the shortest side. Folded three ways. A grossly distorted fat fan. I read it. Wordlessly I passed it to Matt. Bags poured himself some more coffee. We drink espresso boiled on the stove. The bitter sting seems to suit mornings. Matt finished and handed it to Bags.

There was a word burned into my mind, “Bleak.” What did they mean “Bleak”? “The outlook is not entirely bleak”. By saying that they were inferring that the outlook was exactly bleak, and not in a midwinter kind of way. I like that carol. It is my favourite Christmas carol. “Frosty wind made moan”. I felt like that. There was a coldness stalking my bones, freezing my soul. I did not used to think I had a soul, but at that moment I believed I did, and it was turning to ice, along with my heart.

Bags put the letter on the table. “Brain damage,” he spat out, “I'll tell you what brain damage is. Those 15 young lads that gang raped those two girls last night, they're brain damaged.” I stared at him. Matt held my hand across the table. My daughter continued to spoon cocopops into her mouth and kick her little, fat legs in her high chair. “Jordan won't grow up like that,” Bags continued, “He'll have a good heart, and in the end, that's what's important. Brain fucking damage. Don't listen to them”.

I got up from the table and went to the sink. I shoved the plug in the hole. I watched the water run, careless as anything, just running. I wanted to run. Maybe I could be a droplet, in amongst all the others, shiny and clean. I plunged my hands into the water. I was not wearing my rubber gloves. The scalding heat felt good. My skin reddened instantly.

We waited for the first manifestation. Sure enough, at ten months old, Jordan had his first seizure. I forget whether we called an ambulance or whether we took him to hospital by car. I do remember, however, that they could not stop him. He continued to twitch and his eyes continued to roll despite the medication they gave him. For three days it went on. At one point, Matt had hold of Jordan's hand. “Come on my son, come on my son.” He said it so softly. It reminded me of a cliché from a comedy show, or a football fan trying to will a goal. Eventually the doctors were successful.

I asked Matt to take a photograph. My kid, lying in a hospital cot, metal bars obscuring the shot, he looked like he was in prison. I needed the picture in case Jordan died. I wanted to be able to remember what he looked like. A little bit of me died anyway.

It happened again and again and again, about once every three months. Afterwards, even when the fits had stopped, Jordan was weak down one side. His movement would come back. They said that it might get to the stage where that did not happen. It was like sitting on a time bomb.

There are some things you do not get used to, like cystitis, no matter how often it happens, it does not get less painful. I was worried that perhaps he would just disappear. That one day he might just go, somewhere, his brain dying. Every time he started twitching I thought that I could be saying goodbye. I felt sick. I was like standing over a freshly dug grave each morning.

We went to a family support event. It was horrible. There were children who had grown into adults, slavering in their wheelchairs, nothing more than scraps of people. I looked at them and then looked at my son. What would he become? This condition was stealing him right out from under my nose. And all the while I had to love him and care for him. How do you love someone that can vanish at the drop of a hat? How do you protect yourself against that reality?

I felt myself becoming smaller and smaller. I saw pictures of the earth taken from space craft. It was like looking at my life. It was remote. I could not see it in its entirety. It just seemed distant, as if it was something else.

The people around me, friends and colleagues, they did their thing. Maureen was excited about her new car. Lucy worried about her credit card bills. Viv always had a new love interest. I stood on the outside. I wanted to stand up, sometimes, right in the middle of everything they were saying, and scream “My son might die today. I won't know until I get that call,” but I never did. They would have thought I was mad, or worse still, they may have tried to understand and offer me advice based on pity. “I'm so sorry,” is not a phrase I could appreciate. I was not sorry. I was furious.

My daughter took a back seat. It is not that I ignored her, more that I did not have the emotional capacity to deal with anything else. She was cute and smiled a lot. She learned to walk and talk. Her blonde hair was getting longer. She liked watching a particular children's programme called Rosie and Jim. She used to shout “And Jim! And Jim,” at the television, because her name is Rosa and she thought it was about her. She loved having a whole show named after her.

She played with neighbours. Always out and about. We did not believe in things like stair gates. Instead we taught her to climb. She went up forwards and came down backwards, nappy bum sticking out. She giggled when I tickled her belly, which was not often enough. Her laughter was yellow and I was living mainly in grey. I looked at her beautiful, little face sometimes and tried to work out how she had got here.

Her father loved her. He took her out with him all the time. Once he lost her pram on the bus. I could not believe that he got on with one child and one pram and forgot 50 percent of his baggage on leaving. He gave her crisps before she should have been allowed them. I shouted at him. He used to brush her hair and tell her stories. She had his eyes. When they looked at each other it was as if no-one else existed for them.

Mother adored her. Father was jealous. She was allowed to do anything at their house. Even when she shat on their best rug mother laughed. And Rosa loved mother, in a way I never could. Their relationship was simple, neither of them had hurt the other. Mother never raised her voice and Rosa did not have to, because she was listened to. What ever noises fell out of her mouth were interpreted as important. I could have screamed myself hoarse and mother would not have heard, did not hear.

I found myself a job, fairly well paid, as a legal secretary. Jordan was enrolled, along with Rosa, in nursery. Matt looked after them when he was not at college, but two days a week it was a long trot. One time I was pulled out of work because Jordan took bad. I was exhausted. It did not matter. I enjoyed my job. It gave me a sense of purpose. I was away from the home, and the kitchen floor that I could never get clean, because the tiles were made from cheap, brown plastic.

I liked my job. I felt important, organising court cases and being relied upon. I did not make mistakes. It was easy. If you do not make mistakes then everything goes right. It was just a question of being organised and efficient. I could do that. Not everything was fucked up. I could manage and make things work. I earned a good reputation. I learned precision was valued. I was good, really damn good. It did not matter that I had birthed an inadequate and that I could barely communicate with my other child. Hell no, I was good at my job. I worked for the man and the man loved me. What more was there?

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