Just on the other side of 18 years old I began working for what was then Metropolitan Labs as a laboratory assistant. My role was in the patient service centers in community and I would go to group homes, long term care facilities, private hospitals, hospices and individual homes to do blood draws or sample pick ups. I had spent almost 15 years working in the health care sector.
My boss happened to be Dr Don Rix and he was well known for his strength in community-focused care. It rubbed off on those of us who were fortunate enough to have worked with him.
Here I was on the giving end of health care, community care for over a dozen years. I could never have anticipated how that role would soon reverse and I could never have anticipated coining Living Grief; the profound experience of ongoing loss.
I had just turned 30 and was having my third child. I had two boys and was fingers crossed hoping for a girl. On August 3rd 2000 Sophia was born. Within a few short hours, I was sitting in the back of an ambulance staring at my precious little girl with the fragility of life hanging in the air.
It became very clear very quickly that Sophia had a complex health issue. We were marshaled into NICU, neonatal ICU and I found my place amongst the isolates and incubators and perched myself next to Sophia’s.
On day three, I managed to get home at midnight to shower and get some rest and see the boys before I headed back to the hospital to be with Sophia. Before dawn the phone rang and one of the nurses, Jomarie, whom I had met a day earlier, quietly asked me to come back to the hospital right away.
Jomarie’s voice was soft and gentle but I recognized the urgency in her words; “Sophia is having some issues, we have had to ‘bag her’ over night several times and I think it would be good for you to come in”. I read between the lines despite not knowing exactly what ‘bag’ meant. I hung up the phone and sat on the side of the bed and my body for the first time since Sophia was born wept uncontrollably.
When a parent of a child with a life limiting illness uses the word ‘pain’ to describe how they feel, it literally is pain. My chest hurt, I ached for the little girl struggling forty minutes away, my stomach was in knots; I hadn’t eaten since she was born. I looked down through my fingers that covered my face and saw my legs swollen from standing postnatal, next to Sophia’s isolette for the last 72 hours.
Sophia lay in an isolette alone and I now sit here on the edge of my bed feeling utterly, desperately alone, isolated. It was my first experience understanding grief. When you grieve you are alone, isolated within your own self, your own pain, your own heart, mind. No one else, even if they are going or have gone through their own grief, can feel what you feel. It is one of the most personal and alone experiences to endure. Looking back this was probably one of the first moments that I thought my daughter was going to die. I was experiencing anticipatory grief.
Back at the hospital, scrubbing for the mandatory times two, two minutes at the sinks felt like the longest four minutes of my life. I could see the top of Sophia’s isolette from where I was standing. I quickly dried my hands, gowned up and went to her side. The ‘bag’ that I have now become accustomed to seeing, was a little tiny mask attached to a tube that was then attached to, literally, a bag. It is used when someone stops breathing and mimics your lungs. My only experience of it prior was seeing it on a television show like ER.
It is a life saving device…and it sat looming just above Sophia’s head in her isolette poised, ready.
I looked at Jomarie and Jomarie’s eyes were just watering up as she saw mine, and I looked over towards Sophia and it was a horrific sight. She was looking blue, she wasn’t moving, her arms were limp; you could see her respirations. You could see every time she took a breath her lungs would suck into her chest and it wasn’t a good sight.
The doctors came by and didn’t know what was going on. They sent her for CT scans and they still had no idea.
It was one of those moments that could have gone either way.
I was not an overly emotional person and always kept my emotions in check and have always been very reserved about my feelings and what’s really going on inside of me. Even from a physical standpoint. I certainly was never very demonstrative. I always had an area around me that was my space and visibly never let people get into that space. But at that moment when Jomarie put her arm around me, that was the changing point for me and I just broke down and cried right there in the special care nursery. Normally, I would be so worried about what people were thinking but in this moment I didn’t really care.
The hardest thing that day was not being able to hold my child in my arms. Because of the risk to her life, her fragility, Jomarie had to tell me I couldn’t remove her from the isolate and could only touch her through the armholes. Here I was a mother, thinking I was going to loose my child and I couldn’t hold her, pick her up.
Jomarie stepped aside to let me reach in through the armholes to stroke Sophia’s back. She whispered in my ear that if I were to place my hands on Sophia’s head and bum, it would mimic her being in my womb and be a sense of comfort to her. I placed my left hand on Sophia head, feeling her soft dark curls wet from perspiration beading on her forehead as she struggled to breathe on her own, and then placed my other hand on Sophia’s bum, wrapping her entirely in my hands.
I closed my eyes, took deep breaths and just tried to sense my daughter. I rested my head on the warm clear plastic of the isolette and tried to project warm, living energy to move between the palms of my hands through Sophia.
I think I stayed until about one o’clock in the morning. Sixteen hours I sat there on a stool with my hands through the little holes and just touched my baby. I had one hand on her head and one hand on her bum and I just sat there and stroked her for hours and hours. Even when they closed down the nursery for shift change, I did not leave. I stayed the entire time. I didn’t want her to die alone.