“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
Don't know what to say… love your post. Love the photo of Ellanor. Have an ache when i read your words.
Go Plato!
Go gently in the coming days, thinking of you all xxx
My gosh another year gone? Hugs dear friend oxox
So beautifully written.
No one can possibly know how you feel until they walk in your shoes. My mum lost a child (my sister at age 17, when I was almost 7mths old), and I recall one year that my Mum bought a small frame which she put a photo of my sister in, and gave it to my Dad for his birthday. (It was inscribed underneath the pic on the frame with "For Dad".) She just felt that my sister really wanted to give my Dad the photo. It was a very strong feeling she had. And of course, he loved it, and it sits by his bed until this day.
So, I understand.
xxx
That is beautiful. Thinking of you today; in your straddle day, and tomorrow; your heartbreak day, as always in my heart, you and your girls. xxx
I sit with this window open for hours (hence the reason for my lack of comment on Ellanor's 7th birthday post – so sorry) thinking of all the things I want to say.
But all the words seem not right. Too many words. So know that you are always in my thoughts and even more so at this time of year.
Love to you all. xxx
that's such a beautiful pic, Ella looks like you both in that one and so much like Steve in others
I can't imagine being told not to touch my child "too much"
And that dude Plato, he got it right, for sure
Lots of love to you all,
Fayshels & Co.
I think that Plato dude knew his stuff.
All very nicely said hon xx
In the past I might read this, be sad and yet not know what to say for fear of it not being enough. My dad died last week and I've received so many lovely messages. It didn't matter what they said, it was the fact that people had bothered to say something and show they cared.
So I read your post, feel your loss, and I do care xx
Bright light and big love… the best of us is made of these.
What a beautiful post. Achingly sad, but beautiful, just as your little girl was. xo
"Too much". That's terrible. I don't know how you managed to keep your hands in your lap, against all instincts. You're one powerful mama.
Beautiful post. I'm not sure what else to say. Take care of yourself over the next few days xo
You astound me with your writing. In a good way! You take my breathe away and a piece of my heart breaks away with your words and it goes to you and your whole family. xx
Oh my goodness. That is a beautiful post. My thoughts are with you over the next few days …and thanks for reminding me to hug my kids every opportunity I get.
Another beautiful heartfelt post!
Thank you, kind people. A quiet one today xx
A beautiful photo of your precious girl. We only have a few blurry ones of my brother so I know how important these memories are. Thinking of and abiding with you. x
She is beautiful. "Without them, humanity would lose its way in the dark…" Sigh. x
What a very brave lady you are. Thanks so much for taking the time to stop by my blog and leave such a nice comment. What a gorgeous, beautiful little girl Ellanor is (I won't say was. My mum died when I was 25 and I still say is) I had never heard of that reading by Plato – very touched by it indeed and I hope it brings you some comfort. I will send some rays of sunshine towards you from Tenerife. Hugs, and nice to meet you.
It's hard to find the right words to comment on this post. No, I can't imagine being told not to touch my baby "too much". It wasn't until I became a mother last May that I could really be moved by stories like yours. So thrilled to have found your blog, and looking forward to reading more. x
Thanks for commenting on my blog today. I remember reading this blog post a while back and it moved me. It moved me again today. She is beautiful as are you. xx
Thank you for your acknowledgement of reading this, everyone. You can't know how much it means to not just me but the MOTH, Steve.
Annie, this is a new post. I only wrote it on Friday. Perhaps I'm starting to get repetitive on this subject *sheepish grin*