Where has she gone?

All the places I find her now.

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When I look at photos and videos of Ruby, which is most of the time, I find myself saying again and again, “where has she gone?” My surface-level mind and thoughts know, but everything else beneath that shallow surface of reason; my heart, my nervous system, the intricate dance of energy between the cells that make my form what it is - those things haven’t caught up yet. I don’t know that they ever will.

The whole thing has caused me to view time and space quite differently (again).

When she was born, a new part of me was born with her, and when she died, a part of me died with her that day too. That part of me and her are dancing somewhere just above my head in the ether. I think when I say, “where has she gone?” I’m also wondering where I’ve gone too.

They say that in that really pivotal, brutal stage of labour: transition; the point of no return, the point when you have to lose everything to gain everything, you leave your body momentarily to go and fetch your baby’s spirit and bring them down to earth. I can’t stop thinking about whether or not Ruby has gone back to the place from which I plucked her in that moment. (Full disclosure: this ethereal ‘plucking’ was assisted by a very necessary c-section and a very nice team of doctors, but that didn’t make the moment any less significant). I just wonder if its the same exact gateway we humans pass through when we take our form and then when we drop it. There’s a lot of philosophy and deeply moving writing on the subject that I’ve been inhaling lately, that would seem to support the notion that it is.

There are death doulas as well as birth doulas. Although I’m a yoga teacher, and it is a very obvious career pipeline, I most likely won’t become a doula, but if I did, I would probably more likely support death than birth. I thought that long before I even knew who Ruby was, let alone what I learnt from the time she left us.

When she dropped her physical form, and with it all the exhaustion, pain and suffering that it had caused her, I realised just how vast she was as a person. She was larger than life in that body, the one that gave her soul so much to manage. She was radiant for miles even when she was very poorly. Now, she’s infinite; so much so that I miss her being tiny enough to hold in my arms. I miss protecting her and comforting her in all the ways I knew how. I miss changing nappies. I miss changing g-tubes. I miss making up her meds. I miss being her mobility and sometimes communication device, although she didn’t really need me for the latter because everyone understood her perfectly. She was totally articulate and to-the-point without needing any words. I never saw anyone struggle to understand what she wanted or needed. She was, of course, a person beyond her disease, and it can be so easy to forget that when a person is medicalised from a young age. Everything got chalked up to her condition, but I don’t believe that it was always that black and white.

Paracetamol is given like water in paediatric wards, and so often the only requirement for its administration is that a child is ‘unsettled’. I heard this word used often whenever Ruby deviated from her usually smiling, laughing self. Of course she was unsettled - she had a rare metabolic condition that could hijack several of her body’s systems at a time at just a moment’s notice, she also lived in hospital, and whilst that may have been most of what she knew, she certainly had a sense that that wasn’t all there was to be known. Of course she got annoyed, she probably got anxious, and maybe even, at times, depressed. Seriously unwell people know when they are going to die, no matter how young, and Ruby was no different. I write this with tears in my eyes, because it is horrible to think about, but if I ignore that part of her reality then I ignore the totality of who she was and what she went through. Painful though it is, I have always seen her fully.

I see her fully now. She looks and feels very different. She is more nebulous, which in many ways makes me incredibly sad, because as the months go by, which will eventually become years, the image I have for her will keep her at just a little over two years of age. It is so hard to contemplate what she might have looked like at three, and four, even at ten. I had also anticipated what supporting a bigger child, maybe even a teenager with her needs would mean. How it would be incredibly challenging, but of course I could have done it, because she unearthed a strength in me that has made me deeply courageous. That isn’t to say I don’t have fears - I do, but I know now that I can face them. What’s strange is that she doesn’t need me in that way anymore, and sometimes I feel like I have all this strength, all this grit, and nothing to do with it; it can become very heavy at times, like wearing lead armour.

I do feel like she’s watching my every move though, and so I trust that she’ll put my strength to good use when the time is right. She made me a better person, and continues to do so. She made all of us better; everyone who knew her got better in some way. I wish there were more Rubies in the world and fewer Donald Trumps and fewer Nigel Farages. But then again, the world and its capitalist, patriarchal structure doesn’t always champion its Rubies; it tends to overlook them for people who might appear more useful in the conventional sense, but with that utility comes the potential for immense destruction, because power without courage is dangerous.

I keep coming back to the question I started with, “where has she gone?”, and I think the truth is that she hasn’t gone anywhere I can’t find her, if I’m paying the right kind of attention. She is in the strength I didn’t know I had until she gave it to me. She is in the courage I reach for on the days I need it most, which is every day at the moment. She is in this writing, in the part of me that keeps insisting on telling the truth even when the truth is the hardest thing to acknowledge. She brought me here, to this page, to this practice of seeing fully.

I was, and still am hers, and she was and still is, in every sense that matters, mine. We made each other and we are made of one another, both on this physical plane and up there in the ether. Whatever comes next, the love that made us and the love we share is permanent; ever present on either side of whatever gateways we might pass through.

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