2nd May 2018, 9.13am. 6 years and nearly six months since she died.
I sat on the lounge closest to the back door so my body was drenched in sunlight. I had decided to wear something comfortable; my gray loose fitting pants, a singlet top and a nice soft loose jumper. I had my cup of tea sitting on the coffee table beside me and a glass of water. I made sure I’d eaten a big bowl of porridge beforehand so I didn’t need to stop to eat. The box of tissues were ready beside me. I had my phone on silent and turned on the answering machine on the home phone. I wasn’t going to be disturbed until I had done this.
At 7.55am this morning, I had opened the front door to walk the children to the bus stop and there was a package sitting against the door. I looked at the sender and my heart broke.
I stood at the bus stop with the children like it was any other day. But it wasn’t. I kissed them and cuddled them a little too hard as I put them on the bus. I watched the bus drive off much longer than I needed to. I was dreading picking up that package. I knew the minute I opened it life would stand still and it would take me back to a place in such detail that I was frightened to go there.
I stalled. I fed all the animals, slowly. Talking to them and petting them longer than normal. I sat with our goat Mint who is heavily pregnant with twins. I told her that I understood what it feels like to grow two babies. To be so tired and emotional you struggle to draw breath. I gave her belly a rub and was delighted to see the twins wriggling around inside of her.
I ventured up to my vegetable garden. A place of peace and calm for me. I sat on my bench seat and admired the wonder in front of me. I pondered what the next few hours were going to be like for me. I watered my garden gently and lovingly and realised I had grit my teeth so hard my jaw was aching. It was time.
I stood under a hot shower and then dressed in my comfortable clothes. I knew I’d be sitting on that lounge for a while and wouldn’t want to move until I was done.
The packaging was easy to open and the reams of paper were organised in to perfect bundles with cover pages identifying my name, Lucia’s name and Charlize’s name.
Seeing her name in print “Charlize Ersilia Stephens” made me smile. I said it aloud as I stroked my finger over the words.
I read in great detail the events that took place from the moment I entered the hospital at 8 weeks and 2 days pregnant, right up until after Lucia was finally discharged from hospital three months after the girls were born.
I was admitted to hospital on Thursday 10th November 2011. The twins were born on Monday 14th November 2011.
Twin to Twin Transfusion Syndrome (TTTS) was diagnosed as Stage one on the Thursday. On the Monday it was stage three. It was a race against time to get our girls out of my belly and detach them from the placenta which should’ve been nourishing their little bodies. Instead that placenta was plagued with TTTS. It was killing them.
The pathology results that came back on my placenta show certainty of the severity which was TTTS. In fact, it details the disproportion of blood vessels which is so extreme it is a wonder that Lucia survived those last few days in-utero. Her little heart was under so much pressure it was noted that my cesarean was due to a catastrophic event. She was already in heart failure.
During those days that the TTTS rapidly moved from Stage one to Stage three our girls were subjected to absolute terror and torment inside my belly. Charlize’s blood pressure dropped dangerously low then escalated dangerously high. Her entire body was under extreme stress. When she was born she was floppy, she was severely anaemic and she was critically unwell.
I read Charlize’s medical file with my heart in my throat the entire time. Hoping beyond hope that the outcome would look different. That I’d realise this was a terrible nightmare that I’d finally wake up from. Tears streamed down my face and my eyes blurred as I shoved them out of the way so I could keep reading. These are all things I didn’t know. I didn’t know how sick she was from the moment she was born. I didn’t know her organs were already affected by the TTTS and may never recover. I read the medical jargon that described those last hours where I was standing beside her willing her to fight until I realised she had been fighting for so much longer than a few hours.
As I read it was like a slow motion movie played inside my head and my heart ached. I remembered the sounds of all the machines pushing oxygen into her lungs, watching her chest rise and fall in sync with the machines. I remembered the hushed voices of the staff as they tried every single thing they could to change this. I read those words and I remembered hearing them like it wasn’t real. “I have explained to Saxon and Christine that Charlize is dying.”
Charlize is dying.
Removing life support.
A priest is coming in to baptise her.
Would you like to hold her?
Seeing it in the doctors handwriting makes it real. I know it’s real though because it happened to me. To us. To her. Buy why?
I have asked this question for six and a half long years.
Six months after she died a psychologist I was “encouraged” to see told me there was discussion about a contaminated blood transfusion which caused her death. For six years I have harbored a deep sadness that those people who cared so lovingly for my daughters may have been at fault. This was never the case. The relief I feel knowing solidly that this is untrue is like a giant weight has been lifted from me. My shoulders feel lighter, the burden has gone and my heart doesn’t hurt so much.
The final notes in Charlize’s file are written with emotion and love. Charlize died of invasive sepsis. Somehow in her 32 hours of life the medical paraphernalia that was used to save her life, caused an infection and took her life. Her tiny body, only weighing 749 grams, had no immune system to fight it. The infection was too strong for her because she had been fighting to survive for a long time. Our darling girl was tired. Because she fought so hard to survive it most likely saved Lucia’s life. It may surprise many to see me write that I believe divine intervention enabled Charlize to become an angel. The best place for my daughter is in my arms as a healthy and vivacious little person. Had she survived her life would not have been that. Her injuries and illness were complex.
I removed my glasses and wiped the tears from the lenses. I got up off the lounge and I sank to my knees. With the sun warming my face I sobbed. Deep, heart wrenching the sobs. Sobs that I’ve kept in my heart for six years. I cried for losing her. For blaming myself. For blaming the hospital. I cried because of the anger I’ve held for so long. I cried for the psychologist who made insinuations to a fragile, grief stricken mother that caused years of guilt. An emotion that’s plagued me with such ferocity. I thought for years the sepsis came from me. I cried so I could forgive myself. I cried because I was so exhausted from crying. I cried all the stages of grief all over again.
I forced myself to get up off the floor. At least to stop the dog licking the heartbreak from all over my face. I boiled the kettle, washed my face, made a cup of tea and sat down to read Lucia’s file.
Instead of the devastation that was Charlize’s story, Lucia’s file reads of a determined and feisty baby girl with an immense desire to survive. I smiled and laughed as I read Lucia’s file. The nurses made notes continually in her file like this: Baby girl, pink in colour, settled, calm. Cranky when handled. Active when touched.
When Lucia was described as pink, Charlize was described as pale. Pink is life. Pale is not.
When Lucia was described as active when touched and cranky when handled, Charlize was described as floppy, non-responsive to touch. Active is life. Non-responsive is not.
I spent the next few hours reading through the file of the pink, active, cranky little girl whose personality blossomed in the three months she spent in Intensive care. I read and I remembered her intense determination to breathe on her own, often even pulling her oxygen off her face or her IV out of her arm or leg. She was ferocious and her will to survive was obvious.
The sun began to hide behind the clouds and the lounge room grew dark and cool. My body felt lighter. My mind felt clearer and my heart a little less broken.
I will never get over losing her. I will always look at Lucia and wish that Charlize was physically beside her but now I know her story better I feel honoured that we got 32 hours with her. We were blessed to get that. She fought long and hard to be born live and for that I’m forever grateful.
In losing her, we have discovered so much more. Grief does something to you on a deeper level that is indescribable but it stretches you. It encourages you from the cocoon you were existing, to a life you never imagined.
In losing her, we left the city and found the country. We have a connection with the land we never knew existed. The land that gives me great pleasure and calm in placing my hands in it and watching it grow and thrive.
In losing her, we have a connection to a community. We didn’t even know what community was until we found the country and what a blessing it is. This community, the one who never walked beside us when we lost her, have embraced us so deeply that we feel cocooned by their love, support and friendship. They are our family, because of her.
In losing her we live a richer life. We see things clearer and we hear things better. We love abundantly.
All because of her.