When I think back on our lives with Florence, often in and out of hospital and appointments, I remember being fed. I remember food. Another cup of coffee, an oat bar in a paper bag sitting at her feet on the starchy hospital blanket.
I remember the first meal brought to us by dear friends. We were sitting on the cot in Florence’s hospital room, not yet required to be in the ICU because she didn’t have BiPap yet, but still stunned, too stunned to move from the hospital room. We both shared the single cot at night. We ate the meals they brought us for Florence, because she couldn’t eat them, and we ate the Greek lamb and lemony potatoes our friends brought us. I remember the paper bag, dotted with grease, and I remember being fed.
There were the Ziploc bags, still warm from the meatball soup, laced with spinach and rice. Macaroni and cheese under a blanket of breadcrumbs in a soft aluminium pan. Starbucks gift cards so we could buy snacks, coffee in the morning, tea in the afternoon. Chicken corn chowder chock full of sweet cord and shredded chicken. Garden salads with all the trimmings we usually never used but found delightful. I remember empty capers jars and jam jars, half full with homemade salad dressings. Yogurt containers from brands I’d never used before filled a shelf in the fridge, and inside, dishes and pasta salads I’d never cooked before.
There were homemade bird’s nest cookies and baguettes with crackling crusts, oily olives and sliced cheese, and yes, lasagna with no mushrooms. And the drinks, like looseleaf tea complete with canvas bags for dipping into scalding hot water from the ICU family room, cold kombucha and sparkling lemon water.
And I remember the first time I fed my daughter with formula in her GJ tube. How removed I felt from the process. How I always imagined I would finger feed her warm, soft sweet potatoes and curly noodles. I would nourish her with food, as I always had with my milk. I would watch her grow on these things. SMA be damned! I felt so unsure of myself, so unsure of the process of raising a child that would not be raised as I had expected.
So, initially, pouring formula into a bag and connecting it to her belly caused a part of me to crack off. This was the first step towards letting go. This was keeping her alive and this was not a “normal” part of childhood. No more breastmilk, no more prunes or baby oatmeal. I fought so hard to feed my happy baby, with the help of therapists. I wanted her to really taste food before she lost the ability to swallow. As easy as it was for me to say my daughter had spinal muscular atrophy, actually watching it take over her body was a hard pill to swallow.
When I was in the kitchen, I felt an overwhelming need to nourish her, but I couldn’t. I even bought books on making homemade formula with real food, but was discouraged when I realized her jejunum tube would not be able to tolerate this process. I lost my spark. Cooking was not fun. The sweaty kitchen windows and the clicking of the gas oven in our old house only reminded me that my husband and I were eating, but she was not. Some suggested we put her at the table with us, but because she was fed 24/7 and laying nearly flat most of the time, it didn’t feel fair. I never ever wanted her to be left out, so I protected her from having to watch us eat food. SMA took her ability to move and speak, but it didn’t take her brilliant little mind. Because she couldn’t fully communicate with us, I found it unbearable not knowing if she missed the taste of real food, if she even remembered, if she cared. This weighed on me constantly, and also when she had to have procedures done. She couldn’t protect herself with her words or run away. Maybe this doesn’t bother some parents, but it bothered me deeply.
After we lost Florence, I completely lost the ability to cook. The grocery store brought me to tears. I was stressed out by all the options and the decisions I would need to make. Food in my fridge rotted. I didn’t know what to do with chicken breasts or broccoli florets. I think I lived on air for the first few months after she passed.
I remember eating lunch at Canuck Place the afternoon she died. I think of that meal and wonder: how did you eat? Why were you eating? What were you eating? I had an insatiable need to nourish myself for the long road ahead and to remain in denial, but I knew she would never eat again. Her formula had been turned off. I couldn’t even begin to fathom what this meant. I just could not.
So I ate. I strengthened my body, so I could continue breastfeeding my son and function, but she was not eating and she never would, ever again.
I am surprised by how intense my food memories are.
How many meals did we eat—meals that were made in someone else’s kitchen?
How would we have managed, if we hadn’t been enfolded into the ministry of meal making? If friends had not donated their breastmilk when mine simply would not come after trauma drained me? I had to wean Florence overnight, but for some time, she was nourished by donated breastmilk as her little body recovered from intubation and trauma. How would we have carried on, if not for steaming pots of curry and rice? The ministry of meal making and slices of cake and hot (good) coffee really do make our world a sweeter place. People cared enough to care for our most basic need, assuming that we didn’t have the capacity or time to do it ourselves. This assumption was right. Warm food fed us when we simply could not feed ourselves.
Never underestimate small, seemingly insignificant actions. They change the world. As D.L Mayfield says in her book, Assimilate or Go Home, “Some of the most unrecognized ministries are my favorite kind…The ministry of bringing takeout food to people whose baby is very sick in the hospital. The ministry of flower gardening…I never did magically turn into one of my missionary heroes. Instead, I’m just somebody who likes to bake cake.”
Words can fall short, but homemade spaghetti sauce has colour, texture and calories.
I’m so sorry…but I made this.
I don’t know what to say…so I sent this.
I have wept over saran wrapped casseroles and danced for joy over surprise boxes of takeout outside our door.
As a bereaved mother, I wholeheartedly agree that the small, secret ministries and cake bakers change the world. The ministry of meal making, lawn mowing and donated breastmilk saved my heart. Each crumb and drop told me I was loved, our family was valued and people cared enough to invest in our wellbeing.
This post was inspired by D.L Mayfield’s ministry of Funfetti and brand new book, which I had the pleasure of reading early.
Assimilate or Go Home: Notes from a Failed Missionary on Rediscovering Faith releases on August 16th.