Mothers Day Reflections 2020: Visiting fairies and finding rainbows.

On the wall behind my desktop computer hangs a small wooden door. The door is painted a robin’s egg blue and depicts a tiny fairy seemingly floating atop a garden of flowers. The idea of a fairy door is that when you are not looking fairies quietly visit your utilitarian space, perhaps leaving behind some magical pixie dust of creativity and whimsy. I like to think my fairy door transforms my computer desk into a liminal space that allows beauty and playfulness to penetrate my world of sensible and practical work. The idea that fairies might have visited during the night while I slept ensures that I remain open to the unexpected, unusual, even”childish”; perhaps I even look for these things amid the work I do. The fairy door also reminds me to never take myself too seriously.

A liminal space is an area that simultaneously includes both sides of a threshold. It is a paradoxical and often disorienting location of both/and. In life, a liminal space can be a time right before a significant transition. For example, when you are no longer a high-school student, but have not yet started university. In these moments of liminality your identity is uncertain and it is often unclear how you are meant to act or feel. The way forward is hazy, and you often step into the unknown.

In these days leading up to Mother’s Day, so soon after my son’s death, many have asked how I am doing. I haven’t been able offer a clear answer. I am occupying a liminal space. I am the mother of a child with disabilities, yet I am not.

I am simultaneously overwhelmed by often conflicting feelings of grief and gratitude. Of relief and guilt. There are moments when I miss Matthew so much that the act of taking my next breath seems too challenging. These are followed by moments of profound gratitude for 21 years of his smile. I am thrilled that this year my other boys are nearby and safe, and I will spend time with these two amazing humans who call me mom. And then there are moments I am relieved Matthew is no longer suffering, and by extension neither am I. The unburdening of the claustrophobic sense of responsibility, fear, and anxiety that had become the air I breathe is noticeable. And a heartbeat later I feel guilty for that relief. I would trade that unburdened feeling to have a bit more time with my son. I worry I didn’t do enough, and that somehow I could have magically prevented his illnesses and death; yet I know that isn’t true. I know control in the face of medical fragility is an illusion. And I know all of these feelings are normal. Grief is the epitome of a liminal space.

Those who know me know that I believe in talking about chaos. I spent much of Matthew’s life trying to talk honestly about the challenges of parenting a complex child, only to be implicitly and explicitly told that I should tell stories of growth and transformation. I was told I was a superhero or Mother Teresa, when most days I felt like I was the EverReady Bunny running on a hamster wheel with life periodically throwing assorted obstacles in my path. That didn’t mean that I didn’t adore my son, or that I failed to see the beauty and joy of our life together. I just resisted a world that could only hear happy, triumphant stories, and made me feel like a failure for sharing anything else.

I am often frustrated by a world that demands Disney stories full of rainbows, when life is often the random cruelty of a Camus novel. I believe we do ourselves a great disservice when we don’t acknowledge and talk about the tumult of life. Even when people are struggling with life’s grief, and disappointments, our society insists we tell stories of transformation and growth. We fail to understand that joy and sadness, confusion and clarity, can and do exist in the same breath. We grasp for the easy answers found in the black and white, and fail to respect time spent in shades of grey where conclusions are elusive, but there is the ubiquitous hope of a rainbow.

Matthew loved fairies. His favourite cartoon was Tinkerbell. We often referred to Tinkerbell as “the drug”. If he was distressed and we couldn’t figure out what was wrong we would put on a Tinkerbell movie. Often the music and bright colours of the show would calm Matthew. Perhaps Tinkerbell was Matthew’s way of teaching me that magic and pain live in the same room.

I am reminded of Matthew, and his loves of fairies even when in pain, every time I look at the fairy door directly behind my computer screen. This passageway between a world of unimagined possibility and the predictability of my everyday life affirms not only the liminality of my workspace, but of life more broadly.

All this means that this Mother’s Day I don’t know how I’m doing, but that’s okay. I expect that tomorrow will be a day of simultaneous grief and gratitude. Of joy and sadness. Of anger and relief. Of confusion and hope. Of stormy skies and rainbows. The fairy door behind my computer screen reminds me of the overlap, and perpetual movement, between two distinct worlds.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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