Purple Flowers.

It’s been just over a year since I began this blog. The day I actually broke went unmarked in any calendar because I’m not sure exactly what date I would go from. Breaking happened slowly, me fraying at the edges for two years before I tore apart all at once.

And I have gotten so much better. I get up and go to work, assisting other people. I come home and I work quietly, editing for photographers and carefully correcting colours and clearing newborn skin. I take my children to school and their appointments. I lie beside my small children at night and read them bedtime stories. I go with my lover to lunch and he eats the rest of my salad when I can’t finish it. Together we take the children to the beach where my daughter collects and entire basket of shells and we have to convince her to ‘leave some for other people’. I buy myself bedside tables from Ikea and he convinces me to sit on the trolley on the way back to the car and runs with the trolley until I’m breathless with laughter and fear we will crash into a column. I pay bills. I do my hair. I’m blissfully normal.

I sleep.

And this is not something I take for granted anymore. Some nights when I don’t have an early shift I sleep for 9 hours. This time last year 5.5 was normal. This time last year I woke to darkness every day and watched the rising of the sun and tried to breathe and survive. Now days I still sometimes wake before the sun and I watch it rise in my car with a cup of tea in a travel mug as I inch along with the other commuters.

I try to dream.

And my dreams are of fairy lights and lace. My dreams are of plaster dust and lavender. The crown of a newborn head, tiny crescent fingernails. My dreams are of wrinkles and white hairs. I throw the tablecloth of my life out before me and smooth it flat, I am careful to choose what I lay upon it. I watch the wheel of life turn and feel no sadness at it’s passing.

I wake one morning and reach for my camera. My four daughters and I escape the house like puppies set loose and we enter the outside which is different with a camera. Inside the lens everything fits into a box. We find some purple flowers in the grass by the side of a road and we stop to shoot in them. Inside the lens it doesn’t matter that cars are driving past and construction is happening beside us. It doesn’t matter that this spot is actually an overgrowth of weeds. The mosquitos are invisible in the shot. Inside the lens it only matters that there are purple flowers on the ground springing from the grass like hope and that is all I show you. Life is different, so easily distracted by the noise of everything you barely notice the purple flowers. I had driven that road every day but I didn’t see them until I went looking for magic.

That whole year I spent trapped in my own mind, fighting for a way out. Looking for a door.

I was the door.

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Fifteen years later.

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Do you remember the worst day of your life?

My middle daughter is my rainbow baby. A rainbow baby is the child born after the loss of another. They’re the child that can never erase the pain of who you lost but remind you there is joy in the world.

The worst day of my life happened in 2001. I didn’t know when I woke up that anything would be different. In fact, I was looking forward to the day ahead because I was 15 weeks pregnant and was going for an ultrasound that day. The pregnancy was hard from the start. At 5 weeks I had begun bleeding – sure I had miscarried I already had grieved the loss of that baby. The next day I went for an ultrasound and saw a tiny bean floating unscathed. A repeat ultrasound a few weeks later after the bleeding stopped showed a flickering heart beat. The tech saw a shadow of something though and said I should go to the Royal for a better ultrasound. That was the one I was scared for. But there they waved the wand over my stomach, the gel cold on my skin and declared everything perfect. They told me to book in later for a follow up but everything seemed great. Perfect.

By 15 weeks I thought it was just a cool chance to see my baby again. I felt like it was a boy. My stomach had already begun to swell beneath my pants, I had bought the next size up and joked I would need maternity clothes soon. I could feel the faintest of butterfly wings sweeping inside me as he swam in his watery cocoon. I had picked names. I wondered what Christmas would be like this year with a tiny baby. I wondered if my daughters would be excited by their new sibling.

On the worst day of my life I lay in a thin table in a dimly lit room while my husband sat beside me anxious to see our baby. A woman I had never met squirted gel on my stomach and a smooth wand glided across the small rise of my abdomen.

I knew instantly something was wrong.

Here was my baby who was waving his arms and legs in a greeting, here was his rounded stomach and tiny face. But, oh, his head. I can never describe the quiet of that room. The silence as she repeatedly went back over his skull and viewed how misshapen it was. From the front on, he was a baby like any other. From the side, his skull stretched upwards, elongated and almost twice the length it should be. I kept wanting to say to her to please go back to the front view. I didn’t want to see what I was seeing. And I couldn’t pull my eyes away.

“Excuse me,” she said, and left the room.

The quiet between myself and my husband hung thickly in the air. What comfort could I possibly offer him at this time when I knew in my heart that something was terribly wrong? My thoughts spun out in a thousand different directions. Our baby is sick. Something is wrong. I thought of all the ways they could fix babies now, even doing in utero surgery. This was terrifying but they would fix him.

The woman came back with a man. I could walk past him in the street and never recognise him. I have no idea what he looked like. But his words are scarred into my memory. He looked a long time. And then he spoke, “What do we have here? Well, what we have here is a bad baby. A very bad baby. This baby is incompatible with life, a nurse will discuss your options.”

He left and I excused myself to the detached bathroom leaving the woman and my husband alone in the darkened room.

Incompatible with life, incompatible with life, incompatiblewithlife….

A mistake. It wasn’t. They could fix it. No they couldn’t. My son was going to die.

I didn’t want to cry. I gripped the sides of the basin in front of me and stared into my own wild eyes and whispered through gritted teeth, “Stop it! Stop. It… Don’t.”

And then all at once I broke. I keened. I sobbed raw, wretched cries, painfully aware that on the other side of the flimsy sliding door my husband and the woman stood awkwardly listening to the sound of a heart breaking.

On the worst day of my life I was ushered into a room in the antenatal clinic and spoke to a nurse about therapeutic termination. I spoke to a doctor who was efficient and kind and explained the process.

This was what was wrong with my son. He had encephalocele. A severe neural tube defect that made his skull bones fail to fuse. His brain was exposed to the amniotic fluid. He would likely not survive that much longer. He would never survive delivery. He would never take a breath.

The procedure would be a series of pessaries inserted near my cervix to begin labour. After some time I would give birth. He would be sent for autopsy. They would cremate him. His remains would be interred at the hospital. There was a service once a month for the babies like him. Babies too young to be legally recognised as babies. Babies born before 20 weeks. “You won’t have to have a funeral,” they said by way of a comfort. As though the fact that his existence could be erased so easily would be a comfort to me.

On the worst day of my life I set a date to come back. We rode home in silence, my swelling stomach a painful reminder of what we were going to lose.

When I came back to the hospital days later I laboured for 7 hours. They offered me morphine because there is no danger to taking drugs when your child will not survive. I refused because I needed to feel everything. My water broke just after 7pm. A midwife came in and delivered the tiniest fairy of a baby you have ever seen. She announced he was a boy. I couldn’t bear to look at him so she took him away. The placenta wouldn’t shift so I was wheeled to theatre. The shot me full of something that made me sleepy and calm. My face was a blank stone. Tears rolled from my eyes unchecked. A nurse opened the curtains and looked alarmed. “Are you in pain?” She asked. I shook my head, mute and stared at the ceiling. She stepped forward, laid her hand over mine, dry and warm, “Just your heart, hey?” She whispered. My eyes met hers, I gave an imperceptible nod. She gave one back.

They put me to sleep.

The next day they brought him to me. His hands and feet bore blue ink from where they had printed them. He was wrapped in a blanket. I didn’t shift it from the top of his head, not willing to look at the defect that had stolen him from me. I was scared to touch him because I knew he would be cold. I stayed with him a long time. I admired his long feet and tiny toes. Riley.

We went home. I stayed in bed for three days.

Riley would be almost 15 if he were alive today. If I look at his siblings I can almost patchwork together a picture of how he would have looked. For years after his short time on earth, spent entirely within the safety of my womb where he was nothing but completely loved and wanted, I felt his absence often. Because of who I am I wanted an answer why. I researched everything. I second guessed myself. Two years after his death I called the doctor and she patiently went back over everything with me. The hardest things to deal with is when there is no why.

I met a woman a couple of years later who had recently lost her daughter in the same way I lost Riley. She was the biggest comfort to me, someone who understood completely the Worst Day, who knew the helplessness, the agony. Who else could I explain to that even though he passed away, my sorrow was mixed with a joy, because he had also lived. That what you wanted was not always to brush him away as though he never existed but to talk about him. We passed our children’s names to each other and held them like a gift. We could speak freely of regret and sadness and love. I will love her forever for the space she gave me to talk of my son. I hope I gave her some comfort to talk of her daughter.

Now, years later we both have more children. Rainbow babies whose presence in our houses smooth over some of the cracks in our hearts. Children who yell and laugh and dance and sing and remind us that joy can be had.

You may wonder why the worst day in my life was not the day he left me, the day he was born. The worst day was when I knew I had to give him up, never the day I first saw him, a fleeting glance before the nurse took him away. I could never regret that. Seeing him was one of my best memories, however tinged with sadness.

For all the babies who we carry in our hearts, whose mothers and fathers silently sing their name. Whose place in the house is a Christmas ornament on the tree bearing their name, a statue in the garden, a photo on the wall. You were never forgotten.