“Tuesday 10th February, 2004:
I’m not sure about today. It feels a little unsettled. Our girl is still breathing very fast, around 100, and I’m just not comfortable.”
|Ellanor Ruby ~ snoozing comfortably in Daddy’s arms, 10 days old, in a rare moment without CPAP.|
That’s all I wrote. My final diary entry. A diary that had lasted a mere month, one that was meant to chronicle Ellanor’s early start so that she could one day read it.
Each day, I had written pages of details about the NICU. Copious descriptions of what it was like to sit and gaze at my child through a perspex screen, my arms aching while I had to consciously force my hands to stay in my lap. I was told not to touch her too often by a registrar one day. Can you imagine being told not to touch your baby “too often”?? Just pause and have a think about that…..
Today is the straddle day. The day between me having an inkling something was NQR on the 10th and her sudden death on the 12th. I think about what I was doing, seven years ago, on the 11th of February and am still dumbfounded at the clear memories I have. I was, of course, oblivious to what horrors tomorrow would bring and I had shaken off my mother’s instinct of not feeling comfortable about her turn for the worse the day before. It was part and parcel of life in the NICU, where each hour can bring joy or heartache in stomach-lurching peaks and troughs, so I thought this was just one of the troughs I was waiting to come out of. I had brought in Ella’s first grow suit to wear. It was size 00000. It literally swam on her. But she was out in an open-air cot. And things were feeling slightly more normal. We still held great trepidation about the heart operation she was scheduled to have sometime in the coming week or two, when she reached 2.2kg. She was teetering at 2kg. And that’s how much she weighed when the virus (and my hell) struck.
That child, the child who slipped back out of my reach. She still cloaks me. Even though I don’t take her to school of a morning – she would be in grade 2 now, well ensconced in school life – I still ferry her around with me day to day.
I was told off this week by the LGBB, when she asked me where exactly Ella was. I replied, “Well, I don’t know. But I think she is far, far away…” “No, she’s not!” Lolly snapped at me, adamant that her sister wasn’t too far away at all. I stood corrected. I really don’t know at the moment where she is. Sometimes I can feel her close in, sometimes not. It doesn’t seem to correlate anymore with how much I am thinking about her, she flits in and out of my awareness as she pleases and it doesn’t matter if I have been obsessing about her for hours or not. I used to be able to reel her in with a simple, “Are you there?” But not anymore. Not since she was born, actually, have I been able to command her reply.
I’ve long since stopped explaining myself to people when I talk like that. I say how it has been for me. Many simply give me a “If that’s what you believe, then that’s nice” patronising reply. So be it. And then, one day while I was browsing online, I found something written by Plato. One of the most important and influential philosophers in documented history. And I was riveted by the accuracy of what “this guy” wrote, so very long ago, and how much it resonated with what I had always felt. About Ellanor.
So thank you, Plato. I’ll let you say it for me.
“The souls of people, on their way to Earth-life, pass through a room full of lights; each takes a taper, often only a spark, to guide it in the dim country of this world. But some souls, by rare fortune, are detained longer and have time to grasp a handful of tapers, which they weave into a torch. These are the torch-bearers of humanity, its poets, seers and saints, who lead and lift the race out of darkness, toward the light. They are the law-givers and saviors, the light-bringers, way-showers and truth-tellers and without them, humanity would lose its way in the dark.”- Plato