Aching bones that change shape.

On moving through pain.

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I can’t believe that a whole person is gone, and yet, she is everywhere.

She doesn’t always visit me as a whole person; she is something different now. So much of how I knew her when she was here with me on earth was through the lens of her disease. I wish that weren’t the case, but that is the truth. The term ‘life-limiting’, never sat easy with me, because nobody wants to think of their child’s life as limited, and I like to think that my healthy denial and refusal of that term when she was here helped her feel freer in the body she had than she might have otherwise. But the truth is, her body did limit her life force. It made her critically unwell in a matter of hours, sometimes minutes. It prevented her from being able to move around freely and do things that her peers did, like crawling, walking and sitting independently. Although I know she always felt heard and seen by us, and those people who made it their mission to help make her hospital life as curious and enjoyable as it was, I could also see her emergent frustration as she grew, at not being able to make the sounds we could in order to form the words she needed so badly to express.

Her body did hold her back, but it doesn’t anymore.

Now, every night just as I am falling asleep, I feel her spirit land in my bones. As she rests, I can too. Sometimes I see her sleeping, and then I see an out-of-body image of me sleeping, and I look genuinely peaceful, because she is with me. I used to dread night time and sleep, for the way you are laid bare and at the mercy of the wilds of your subconscious, and I think she recognised that, so she comes to me and adds the necessary weight to my bones to let them rest.

My bones are heavy. They also ache for her, but they ache with her too. I find myself tired and restless in the day. I’m learning about myself all over again. A person with more time for herself all of a sudden. It isn’t time I want, but it is what I have, so I try to fill it in a way that honours her. Her helping me to rest at the end of each day makes me think that maybe I am doing an ok job.

My bones ache because they are full of her. She rests in them so that I can rest. She weighs me down with the gravity of her life and legacy; a life unfinished and one that, I feel, is now being lived out through me. My bones ache because she is still stretching them, just like she did when she first took shape inside my body, reminding me and holding me to what I am really capable of. She was tiny at birth, but she still cracked me open in that mighty way that babies do - completely dependent on you but able to pull you out of any comfortable resting places. She taught me the value of discomfort. Comfort is nice and it is pleasant and it is containing, but it is not sustainable. I thought that what made change painful was that the place you are going to is made of such new and un-accommodating terrain, but what I know now is that the pain comes from having got stuck in the place that you thought was comfortable. Maybe there is a more poetic way to say that, but for now that is all I’ve got.

I’m finding that she speaks through me in this way. She’s not ‘real’ anymore in the physical sense, but everything she says is the truth, and I try my best to convey that, even when it isn’t perfect.

Occasionally, I do dream of her more vividly. The deeper recesses of my subconscious take fragments of who she was when she was here, who she is now, who I was when she was here, who I am now, and life as it was then and life as it is now. It can be terrifying and confusing. I am told though that this is a good sign, that parts of me, and maybe parts of her feel safe to look at some of the deeply traumatic things we shared when she was alive, and also some of the beautiful things, that I miss more than anything else. Both are very painful because one was denied and one is lost. Either way I’m missing parts of myself and so is she.

I’m reflecting more and more on the things that were done to her medically, the things she absolutely, without question needed, and that I am so grateful for because those things gave her more life, but they were things that could be cruel all the same. I am sad for those pieces of agency she lost. I wonder if our combined processing, and her reminding me of these difficult things in my dreams, is her claiming that agency. I hope so. She deserves it, and it is worth the traumatic memory if she can feel whole again from it.

During the earlier stages of my pregnancy with her, someone asked me if I felt truly “alone”, that is, did I still feel like just one person, or was I starting to feel like two. This is a valid question, because it varies so much mother-to-mother. The truth is, I knew her before I even became pregnant with her, and I know her now even when her physical presence is gone. It is different now, but no less powerful, no less constant. I talk to her all the time. She accompanies me through everything. She wakes me up when I’ve started to day dream and she requires my focus on something. Sometimes with something quite visceral, like a window or door slamming, and sometimes purely just a felt sense. She is stronger and wiser than me, and I only appear strong because of her. She has made me who I am, and that is part of her legacy.

Whenever I don’t feel like doing something, that is usually her way of telling me that I need to do it. Comfort and familiarity are nice, but they’re not helpful or necessary all of the time. I’m not entirely sure where I am going with this comfort thread yet, and I assume it is something she wants me to understand.

I think that my version of comfort, the seeking of it and the keeping of it, can be harsh too, because so often it can be about control. Controlling my grief, controlling how I feel it (I can’t), controlling how others see it (I also can’t). Comfort can become quite rigid and suffocating. It’s hard because, now that I no longer live in hospital, on the perpetual knife-edge of hyper-vigilance, I can feel parts of me able to relax into the possibility that maybe it is ok to breathe a bit more deeply, but the thing is, I miss the hyper-vigilance. My husband says the same. We miss the intensity. It was hard and it is not healthy for a person’s nervous system to be wired like that all the time, but it was incredibly purposeful and we both grew about ten life times in the space of two years. It is hard to maintain that growth edge when the impetus is gone, but also, in contradiction to my comments of comfort, you probably aren’t supposed to grow all the time. It isn’t possible to.

I think I am struggling with what now feels like down time. Grief isn’t really down time, but grief after two years of non-stop vigilance is. Many understand the experience of grief, but fewer, by its very nature, understand the rare disease parenting experience. I am grateful for it, and I feel deeply honoured by it, but it is hard. I knew hard for so long that it became my normal. I am struggling with softness now. I am struggling to soften into my grief. I am struggling to show people that I am softening into my grief, because I can only really cry in private, but I think grief is also private and how I grieve is between me and Ruby, and that is a very private relationship now.

For some reason, writing is the easiest way to speak about her, and it feels like it is healing us both. I think she wants me to write about her. It is always hard to know what is right to share when it comes to your children, but I do feel that my writing has changed since her passing, and I can only assume that it is her voice wanting to be heard through me. I hope I can give her all the words she struggled to find in her life. I have always used words to make sense of things, not just in a literal sense, but I use words in the same way artists paint scenes. I embellish them and I sometimes edit them. One of my favourite authors Arundhati Roy says that “there is no such thing as fiction” and I truly love and believe that, because whilst reality can mean different things to different people, the truth is what stands out, whatever form it might take.