“I want to raise up the magic world all round me and live strongly and quietly there.” - Virginia Woolf

A thin coil of regret stirs inside of me when I think about how vulnerable I was. I shared for years on my blog and social media about what it felt like to be a first time mother of a dying child. It’s a part of my nature, to be real and openhearted with where I’m at, but revealing a bare heart online lands differently than around a trusty kitchen table.

For years, I expanded, contracted and poured out on the internet. I became known as a “strong” woman who cared for a sick child, and then grieved a dead child. Although true, once published online, I noticed I was pushed into one corner of the human experience.

Two years after Instagram launched in October 2010, my first daughter Florence Marigold was born. Instagram had gained 50 million users by then. My first post on Instagram, in October 2011, was a fuzzy image of my bare pregnant belly. It’s apparent from the beginning, motherhood was how I defined myself on social media. 

I began writing on my blog many years earlier in 2006, sharing my adventures abroad. I offered recipes I’d adapted from my travels, like smokey chai (the secret ingredient is black cardamom), vegetarian borscht and black bean brownies. As motherhood met me in 2012, I shared reflections on falling in love with my baby, alongside recipes for dandelion vinegar and thoughts on cloth diapers. It was sweet and safe.

Gathering around grief 

A heavy, black thundercloud rolled in not long after her birth. I tried to maintain a chipper, faith-filled attitude online. However, my world was imploding, and the fear started to ooze over everything. Florence was diagnosed with the life-limiting neuromuscular disease Spinal Muscular Atrophy type 1 at three months of age.

I tried to heal myself through my expression and creativity. It helped, but it didn’t mend me.

I shared about being her mother. I gushed with love. I wrote about the grief, mostly under it or behind it. I shared about a strong albeit naïve faith as it was being shaken, changed and challenged. I unintentionally avoided the grit of grief, bypassing much of my fear by writing digestible, hope-laden pieces on what it felt like to be a mother in this way. Then, I wrote about what it felt like to pick up the pieces after three years of anticipatory grief and her death on May 9th 2015. I tried to heal myself through my expression and creativity. It helped, but it didn’t mend me. The pain and trauma ran too deep for Times New Roman.

I was desperate for connection and an outlet for my pulsating grief. I’d have a cold glass of Sauvignon Blanc, find a photo of Florence, turn up the music, write and sob, feeling alone in our bright garden suite while my son gnawed on wooden blocks on the IKEA carpet. The reality is, the “likes” didn’t do anything to address my grief. I knew this, but I kept at it. It felt very cathartic. It was certainly more palatable for others when I shared my sorrows through a screen, but my grief still had not fully met me. It caught in my throat, a cottony ghost needing someone to look it in the eye. 

I was looking for witnesses, while also wanting to help and connect with other mothers of medically fragile children.

There wasn’t really a space for mothers to share about losing a child on social media back then, so I started the hashtag #mamagrief. I was looking for witnesses, while also wanting to help and connect with other mothers of medically fragile children.

I shared images of our forever three year old, marigolds, and my new memorial tattoos. I shared about her baby brother, the wonder and miracle of his good health and the joy he brought us in the aftermath of parenting under extreme medical and emotional stress. I catalogued my grief. I shared images of Florence’s old toys, wrote letters to her signed, Love, Mama. Later, I even tried out “influencing.” I was young, beautiful and erupting with fertility and emotion. I met other bereaved mothers and mothers of medically fragile children in Vancouver through Instagram. We got together for wine and dark chocolate, shared our stories, cross-pollinated and bonded. 

I grieved, mustered, mothered, and life was full. I wanted to move forward into the next chapter, where I would be a mother of three living children. After my final pregnancy ended in the birth of my second daughter during the early months of the pandemic, I started to really wobble. Then, in December 2020, when she was six months old, we moved back to the island I grew up on. I was nauseous often and saddened that I had to address the swell of anxiety that was threatening my way of being in the world. It was supposed to be a joyful time, I thought. It was, of course, but it was tinged. It all began to feel like too much.

Drawing the curtains

I deleted my blog and Facebook. I erased with mighty strokes, page after page, until I reached all the chalky corners. I couldn’t read some of my posts without feeling my toes curl. It felt good to remove the good, the bad and the I don’t feel that way anymore posts. I needed a way to acknowledge the change and find a slower, more private way of being online.

I noticed how I wanted to stop writing. So my fingers stilled. I found other things to share about. 

I could sense the curtain being drawn. I needed to greet the grief and trauma. I needed to stop sharing photos of my children, and so much of myself. I was threadbare, tipped over a pit of roiling grief and anxiety. My public mourning had been shaped into Instagram-sized posts for friends, family and the many others who had joined along. I was skimming the surface, and I began to see it. Sharing online is not a path to deep healing. 

I found an incredible therapist who helped me recognize the parts of myself that needed attention, while also guiding me back into my body. Nothing was fixed quickly, much to my dismay. It was a slow, controlled burn around the edges of the forest. Yet the black waves that swept over me felt like silk. I was ready to flood into every corner of my being that needed tending. 

Being back in my old hometown was medicinal, but my community had changed. I’d left behind my best friends in Vancouver. I’d arrived in the middle of a pandemic. Others’ lives had changed too, and I felt like no one really knew me anymore. 

Yet, I began to see myself in a new, loving way. I felt free to step away from being known only as a grieving mother. I stopped drinking alcohol, in an effort to care for my body and allow myself to be fully alive in every moment. When I discovered I could tolerate the dark emotions and metabolize the frozen grief, I knew alcohol would act like an eraser, fuzzing out the edges. I didn’t want to erase anything anymore. I still don’t. 

I believe in admitting how social media makes a mess inside of adults, too. It does something we can’t always put our finger on. And we need to talk about it.

The seduction of a social presence 

As I eased into my changing body, spirit and mind, I began to share more about these changes on Instagram. I slowly lost followers. I felt gut-punched when heartfelt posts received fewer clicks or when people would “unfollow” after I posted something that felt so right and real for me. I stood in the corner of the kitchen like a teenager, one foot flamingo planted, the corner of my lip curled under a tooth. Five more minutes to dinner, I said to the kids, sure grab a granola bar. I tried to make sense of it by staring down at this lit up device in my hand, sucking me in. I guess I’m not that interesting anymore, I thought. And then, this is not me, this is not me they are walking away from. It’s a page on a screen that looks like me. I’m changing and people want me to stay the same, or so it felt. I began to realize how tied up my grief process was on the Instagram platform, and how that made everything more intimate and interconnected. I believe in admitting how social media makes a mess inside of adults, too. It does something we can’t always put our finger on. And we need to talk about it. 

I need my own quiet world and creativity, yet the deep drawl calling me to beef up my online social presence seduces me, even still. 

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The “car crash” posts draw people in. Someone else’s catastrophe distracts us. Sharing about death, diagnosis, divorce, moving, financial insecurity, mental health struggles, or physical pain, to name a few, help us feel less alone, and also cause others to slow down and stare, as some do when there’s a flood of red and blue lights illuminating a wreck on the side of the road. 

I still show up and share with vulnerability about what’s moving me, but I feel more burrowed into my inner wisdom.

Other People’s Suffering still trends. Everything is right there, waiting to be consumed. It takes work to look away, to concentrate on what’s real in front of us. It’s become a place where we check news and opinions more than we check in with our real world friends, and our own good bodies. I still show up and share with vulnerability about what’s moving me, but I feel more burrowed into my inner wisdom. 

Tending what’s real

I still want connection, I only wish I didn’t have to reach for the iPhone in my back pocket to get it. I feel winded by the power of it all, and I’m grateful for who it does allow me to connect with. My family, for example, curled up at home in bed, while I video message them from the airport.  

We are in a relationship with social media. When we acknowledge this, we can ask ourselves what we need from this relationship to show up as our most healthy and present selves.

I have set new boundaries for myself this year. After my annual four-week break from Instagram, I recognized that I didn’t miss it, but that it will still be a part of my life. When I interact with it, I’m drawing on connections I’ve nurtured for years. If I don’t log on, many of these connections will likely disappear forever. I’m not sure I can leave behind the hundreds of memories and folks I’ve become accustomed to. This is the trick of it all. 

We are in a relationship with social media. When we acknowledge this, we can ask ourselves what we need from this relationship to show up as our most healthy and present selves. I want a better way to be present online and in my life. 

If you also find yourself looking for realistic ways to interact with your phone and social media, here are some of my takeaways: 

Spend less time writing on my phone. If possible, when writing anything longer than a paragraph, move to a computer. 

Choose specific days to check in on social media. This may seem simplistic, but notice how often you reach for it and you may be surprised. The less time I allow myself, the less time for mindless scrolling, comparison or consumption. 

After posting or when bored, check in no more than three times, even if it’s only for a few minutes. This is how the cycle starts, so stop it before it becomes second nature. 

Spend less time making posts perfect for easy consumption on Instagram. It’s okay to cultivate what I desire, not what the algorithm or trends are doing. My life is not a formula to garner more clicks or attention.   

Keep maintaining the golden rule: no phones allowed in the bedroom or bathroom. 

Notice how social media makes me feel in the moment. Am I comparing? Holding my breath? Bypassing what’s in front of me to look at the screen for one more second? If so, take note and turn it off. 

Work to maintain these boundaries and consider making bigger changes in this complicated relationship. I control how I use my phone, not the other way around.

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