A decade with an epicure

Neve and food, food and Neve

Neve, age 5, eating ice cream in Toronto, in August 2018. Painted with Grey Ochre watercolour paint from The Stoneground Paint Company.

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epicure: (ep-i-kyoor)

• one with sensitive and discriminating tastes, especially in food or wine

• implies fastidiousness and voluptuousness of taste

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Neve and food, food and Neve. Entwined, crammed into a decade. From around the middle of her first year, until around the middle of her tenth year. A crowded time of delighting in eating, of her quirks and fastidious preferences, of memories. 

In hindsight, a reduced appetite indicated what was to come, even before her cancer diagnosis. Other than chemotherapy also reducing her appetite, most of her eating was filled with gusto and passion. This was a child who lived to eat. 

I dreaded what a loss of her swallow, a possible impact of her brain tumour, might do to her quality of life. Though her appetite and ability to eat fluctuated in her final years, particularly when critically ill or on specific medications, Neve never lost her swallow. She continued to eat until almost the end, joining us for dinner two nights before she died. Even then, mostly asleep and so very unwell, she insisted on eating crusty bread and smoked salmon. Neve showed us all that sleeping and eating were not mutually exclusive.

Before she died, I didn’t know the power that food would have, to make me smile, to conjure Neve in my mind. The focus on food, her eating, the joy she found in snacks and meals, her particular wants and needs; we were making memories every day, without even trying.

Freddos have become synonymous with Neve, a memory shared by many. First tasted at our hospice, gradually they occupied an important place in her life, even when she mostly stopped eating them. Visits to the hospice always involved strategic negotiation on Neve’s part, to ensure that the care team and I were all on the same page. Two Freddos and two biscuits, for each day of her stay. Medicinal/PRN Freddos could be prescribed as needed, to accompany emergency seizure medication, and were always extra.

After Neve died, I found a small stash of Freddos in her bedroom. Acquired on later hospice visits but uneaten, due to her changing appetite. I am sure she found comfort in having them there, just in case she might ever want one. 

Now, we like to give Freddos with birthday cards and gifts, a little reminder of Neve, to share with those who did and those who didn’t know her. Neve ripples, in the form of small chocolate frogs. I think she would like that.

Neve’s food joys and therefore my memories of Neve go far, far beyond Freddos. There is no end to my inventory of Neve’s food. I could fill a book with recipes and lists, stories and memories. There is a tale for each item of food, anecdotes that make me smile and that make me sad. As I continue to put one foot in front of the other, I ponder Neve and her life, through the food that she loved, that nourished her strong and dying body and soul. 

However, as ever, it’s not just in the things that are that I see Neve, it is also in the things that are not. She had firm dislikes too, tastes and textures that she found unacceptable. Thinking about Neve’s food dislikes also brings her to mind, often with a wry smile. 

Only after her death did I discover caramel filled Freddos. I can’t know with 100% certainty but I strongly suspect that she would have disapproved. Textures mattered a lot to her and this would have broken her uncompromising ideas about what was and was not ok.

She absolutely refused to have milkshakes or other similarly textured foods and drinks. You can imagine the conversations that we had with her medical team, as her ability to chew and swallow started to fluctuate and at times decrease. Thickened drinks or blended foods can be a way to continue to eat, when a swallow is becoming unsafe or unreliable. Neve would vigorously refuse, a strong thumbs down, to have anything to do with these options. 

No yoghurt, no milkshakes

No thick blended soup, no, no, no. 

No ketchup, no honey, no maple syrup

No baked beans, no energy drinks

She wanted to EAT. To her, the texture at the intersection of crunchy food and liquid drink was not food. She needed to chew and only actual food would do. Take away your offers of milk shakes and bring her some crusty bread! Mostly, she would ask politely. But this belied her frustration and exasperation at being offered items which masqueraded as food. Ice cream was one of the few exceptions she made, though she always knew when we were trying to offer it instead of real food and she would not stand for that.

Most of the food memories that evoke Neve are things that she loved and things that she hated. There is however a third category, not one that I had thought about, until after she died. I was unaware that seeing food that she had never tried would conjure her in my mind. These are more complex evocations, tinged with sorrow. I am left to ponder what she would think about them. Would Neve like them or would she not? Sometimes, like the caramel Freddo, I feel quite confident in my knowledge of Neve and there is relative certainty. 

But not everything is like that. Recently, I saw a Freddo Special on the drinks menu in a restaurant. Cold espresso, Baileys, milk, cocoa powder. Clearly, not a drink for a child, but Neve came immediately to mind. What would she make of a Freddo Special? 

We will never get to see Neve grow up and try drinks like this, so I can only guess. She liked chocolate milk and Freddos. She was intrigued by the smell of coffee. Baileys had not yet crossed her lips. I do not know what she would think of the individual components, and I am even less certain of how she would view the combination. I think a grown up Neve might like a Freddo Special. If she didn’t like it, she would at least have laughed at the idea of it and might have questioned the logic of combining good things and ultimately spoiling them all. Possibly, she would have done this very vocally!

Perhaps we will make this and drink it in her honour, even though she won’t ever taste it and we won’t ever know what she thinks about it.

But what about so much else? I can guess, as I knew her well, her tastes and preferences. But she would have changed and grown, as children do. My guesses are only that, guesses. I will never know. As time goes on, I notice more and more foods and dishes that Neve had not tried. Whilst she packed a lot of eating into her decade, she was still only a child when she died. This uncertainty, the unknown, sharp as it is, continues to bring Neve to mind, to nudge me into musings about what she would have been like as she grew. 

The memories that I am left with, after watching Neve cram a lifetime of eating into a decade, are powerful and evocative. I smile, I feel sad, I laugh, I feel sorrow. The unknown is hard. The foods that Neve never tried leave an ache of uncertainty, of a foreshortened life, of an absence. 

Neve, painted in Winsor & Newton Cotman watercolours