Porridge

Always with brown sugar

I am pausing my writing about the links between birth and death, just for now. I will come back to it in time.

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Neve age 10, February 2023. At home, two months before she died. Painted in Titanium Grey from the Stoneground Paint company.

Finally, the weather seems to be turning. Warmth in November is disconcerting. Neve was born on a frosty November morning; mild air at this time of year doesn’t sit right. The chilly air is bracing and very welcome.

I pull out wool sweaters and dresses, boots, thick socks. In Neve’s final years, her temperature regulation was all over the place but mostly she was much too hot. She would have welcomed the cooler weather. I look forward to fires and cozy blankets, warm soups and hot drinks.

This week, I am drawn towards porridge. It has been many months since I last ate porridge. Neve and food are synonymous; a multitude of dishes evoke memories of her. Porridge is high on that list. I wondered what I would find if I searched through my emails and messages for the word porridge. Unsurprisingly, most mentions of porridge also included mentions of Neve.

In some ways, porridge is a surprising staple for Neve the epicure. This was a child who didn’t like soft textured food or bland flavours. Crunch and taste were her criteria. So, how did porridge fit into her life? My best guess would be that it was a vehicle for sugar!

Porridge and brown sugar, painted in a variety of colours from The Stoneground Paint Company.

Even before Neve was ill, she enjoyed porridge. In the spring of 2020, she wrote out her own porridge recipe, which she faithfully followed for the rest of her life. Very few words were spelled correctly but oh what a brilliant recipe. Though she was not yet diagnosed with cancer, Neve was already struggling cognitively by this point. She was losing reading and writing and spelling abilities. I remember how much effort she put into typing up this recipe. All without any knowledge that it would one day be a precious reminder of her and of her life.

A RESUPY FOR PORIGE

FIRST GEY A SPOON, BOW, AND OTS PUT A CORTER OF OTS AND A HALF CUP OF WATER IN THE BOWL THEN PUT IT IN THE MICROWAVE FOR 2 OR 3 PRESIS AND WHEN YOU HAVE DON THAT TAKE IT OUT AND PUT THE SUGAR ON.

INGREEDEINTSOTS

OTS, AND, WATER.

Whilst mostly a breakfast food before cancer, eventually porridge lost its morning time boundaries. I recall a period of time, months perhaps, where she had porridge for most of her meals each day. Before Neve, I might have assumed that this type of eating would occur near the end of a life. Soft and simple food, for a frail and weary person. Not for Neve though. This period was certainly a time of ill health but it was many months, if not years, before she died. Had you asked me then what I thought her very final foods might be, I am certain that I would not have guessed smoked salmon and crusty bread.

It turned out that an addiction to (sugary) porridge can only last so long. In time, she grew bored of her self declared porridge diet and was back on to other foods. Porridge remained on the menu but with less regularity. Not with less sugar though.

Reading backwards through my messages and emails, patterns emerged. Neve would have liked that, she was always one for patterns. There were messages of reassurance, confirmation that the regular nurse had explained to the new nurse exactly how to make Neve’s porridge. There were joyful messages, excitement that the hospice carer had managed to make the porridge beautifully and that Neve was thrilled. There were messages of concern, anxiety from a nurse that Neve might not approve of her attempt at making porridge. Followed not long after by messages of relief; Neve had given it two thumbs up.

Sugar was a regular topic of discussion. It had to be brown, that wasn’t up for debate. Quantities, however, were constantly debated. “Neve says she is allowed more sugar, is this ok?” Neve was always up for pushing the sugar on porridge boundaries, in the hope that she would settle on the right nurse or carer who didn’t question her wishes. Sometimes I would remind myself that despite the fact that she was dying, I did still have to keep regular boundaries in place. Life needed to continue and we needed some order. Boundaries were necessary for that to happen. Besides, too much sugar wasn’t great for her comfort.

Other days, I would remind myself that this child was dying. I would think about her suffering and her sadness. In these moments, extra sugar seemed irrelevant. If it made her happy, surely that was what mattered? I would veer between these views, never sure what good parenting really was, when your child is dying in such a complex way.

Neve, age 10, painted in Titanium Grey.

I find an email thread, between myself and a speech language therapist. The message contains eating guidance, given that her swallow was increasingly unreliable and unsafe. The advice was to give Neve minced and moistened food. I still shudder, when I read this. Then my reply, my explanation that Neve is dying and food is one of the few things that brings her joy. As such, I don’t intend to mince and moisten her food. I can’t think of a texture worse than this, for Neve.

Yes, I am ok to take responsibility for this, for the possible risks. I don’t mention that I would have serious concerns for my own welfare, if I attempted to mince and moisten her food. This also doesn’t seem like the moment to tell her that Neve’s other addiction these days is whole almonds.

I wondered why this message appeared as I searched for porridge. Then I see it, porridge, on the list of advisable foods. Phew. Perhaps porridge can be the place where this otherwise lovely speech language therapist and I can agree. I assure her that I will suggest porridge, particularly on the days when Neve is struggling to swallow.

I find older messages, from when Neve was still having cancer treatment. Mention of a dietitian appointment, on the same day as her final MRI, the one that confirmed to us all that she was going to die from her cancer. Chemotherapy and radiotherapy had led to a very low appetite. Mostly she was eating eggs, sometimes porridge too. We were concerned that she wasn’t eating enough; unsurprisingly, she refused any of the recommended nutritional supplement drinks.

The dietitian suggested adding nut butter to her porridge. Neve was incensed at this suggestion, absolutely outraged. Peanut butter had always been a firm favourite, that was true. However, nut butter and porridge together was an absolute aberration. The message continues, detailing how I had to stop her from throwing her iPad at the otherwise lovely dietitian who sadly didn’t know Neve well enough.

Looking even further back, I find an email from May 2020, from Neve’s teacher, in lockdown. She is responding to the message that I sent her, which contained Neve’s porridge recipe. She has attached a “Wow” slip, congratulating Neve on her awesome spellings and the fact that she has used 'first' and 'then' really well to show the order of what to do next. I think back again to how proud Neve was, of creating and typing up her recipe.

A thread of porridge, a most unlikely food, wandered through Neve’s life. I smile, as I imagine all these carers and nurses out there in the world, safely holding Neve’s porridge recipe in their memories of her. I hope they have not stored too much anxiety alongside the detailed instructions. It certainly was a fraught experience, with nowhere to hide, other than under extra sugar. Whilst the porridge passion waxed and waned, the attempts to get more sugar were always present.

In time I learnt that there was never, ever enough sugar initially. More sugar was always needed. So, in a bid to juggle the competing instincts of parenting a dying child, I began to regularly under sugar, to start with. Then, I could say yes, sure, of course you can have more sugar.

I am aware that the waves of grief are increasing. Perhaps it’s a time to lean in to this, as the weather cools. A time for porridge and woollens, for fires and warmth, for sadness and smiles, for sorrow and rest, for beginning to paint the more recent Neve. Illness and treatment changed her face so much, yet she is still most definitely Neve. Her love for porridge and brown sugar remained as consistent as the shape of her eyes, the spacing of her features.