Onwards

What an honour. I mean, what an absolute joy it is to spend time with this child. It always has been; I haven’t developed a sudden appreciation for her. She’s been a most marvellous creature since her entry into the world. Long adored.

She keeps going. I’ve no idea how she manages to still be ‘Cleo’. Her marvellous quirks, her dry take-downs of her brother (Oscar; Tristan is as-yet immune), her warm affection. Her ‘alright, you’ve got me’ side-smile. I know her so well.

All change

‘Team Cleo’ had a rough week last week. The clinical trial is finished with. When it came down to a choice of having a drug pumped into your child’s arm that just isn’t going to make the blindest bit of difference to their quality of existence and going for Cake and Tea, there was no longer any question. The cake and tea tasted great; the cuddles which accompanied were soft and warm. We tried, so hard, but the latest and last ever MRI scan told us no, no more. Enough.

I feel a huge amount of frustrated regret about leaving the clinical study, but it is the right thing. We furtively hoped, almost beyond reason, but this was not the ‘magic bullet’ that makes sensationalist headlines and sticks in people’s minds as offering a curative possibility. We have long said that we wanted Cleo’s experiences of having a brain tumour to have a meaningful impact, to contribute whatever we could, so giving something constructive through research felt like the right thing to do. But when time is unequivocally confirmed as being short, spending it richly well is the most important thing. A non-essential day a week in hospital became too costly.

We made the decision to tell the children where all this is heading. We had to give them the chance to notice and appreciate and begin to process and understand. I thought, with all my professional training and the preparatory thinking I’d done about what needed to be said and how to say it, that I was just about ready now to steer this conversation. That I’d hold it together and offer some maternal wisdom and clear-minded emotional support to my children (later dissolving into a glass of wine or three once they’d all gone to bed). The reality was that, in the moment, having gathered Ella and Oscar together, I crumbled into tearful pieces. Alex stepped forward with a gentle, child-sensitive, in-the-moment delivery of something so big and so grave but so kind and warm that I just listened in awe. His words said all that was needed while also keeping the children safe. He is a wonderful man.

They’ve been ok since, Ella and Oz, amazing individuals that they are. After giving them the news we all went out for dinner and then the cinema. It was almost normal. They know the door is open to answer any questions they have, any time. I’m not going to betray the privacy of their relationships with Cleo any further, only to say that the way in which the goodnight hugs at bedtime have been held, just a little longer, has been noticed. Oscar bought Cleo a new cactus. She named him Cedric. I adore this bunch.

Just the same

The last few days have been blissful. Steroids and luck have meant Cleo has felt well, so we have capitalised. Nothing elaborate,  just good quality fun happy time spent with friends and family. It’s been as close to ‘typical’, for us, as we could get. Totally glorious and sustaining. It’s been a relief to get together and be in the company of people who simply know us, who we can swear heartily with about the total unfair bloody awfulness of it all, who notice the tear that escapes and don’t probe for explanation, or offer undesired advice. And to drink beer and laugh, talk about how they’ve grown, about music; anecdotes.

Sitting around the table having breakfast together; Daddy’s homemade bread with multicoloured dippy eggs from our friend’s happy chickens (as well as the inevitable bowls of sugary hoop cereals).  I breathe it all in, try to take photographs with my eyes. Remember this, remember this.

Moments

I slept beside Cleo again last night, in case she needs anything through the night. It was completely lovely. Listening to her breathe, feeling her warmth. She rolls over, slowly opens her eyes, finds me there and smiles a smile of love, safety, gladness, before closing her eyes and dozing again. She entwines her fingers with mine and we both sleep contentedly. Early in the morning, I wake first and watch her as she snoozes while I breastfeed her baby brother. Her flawless cream skin, freckles sprinkled across her dainty nose and raspberry-sorbet cheeks. Long, long lashes. She’s divinely pretty.

Looking at photos from a year or so ago I reflect on how much Cleo’s grown up, physically. Her face and body have begun the process of at-first subtle change, but she is undoubtedly on the way to becoming a marvellous young woman. An automatic process beyond conscious control, beyond the reaches of the fat jellyfish. Also very hard to dwell on for long without slipping into the unhelpful realms of self pity. It’s so bloody cruel. But she’s still here beside me so there’s no room for the past tense, not now. Not yet.

We’re still here, together. We’re still living, soaking up togetherness. Devastatingly happy 😊