I can't imagine...

And the misconception of this beautiful life.

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I attended a caregiver’s respite retreat for the first time this weekend. I’ve been a parent to a child with a disability for nine years, and this was my first experience of intentionally created and purposefully implemented respite. I spent two glorious days with two dear friends who also have children with disabilities in a log cabin with a wood-burning fireplace surrounded by trees. The weekend was aimed at reflecting on the role of a caregiver for a child with a disability, which can be infused with intense feelings about your family's specific circumstances. Two days felt short, but it also felt like a gift, and we settled into taking advantage of whatever brought us peace: Puzzles, books, walking, sleeping.

My mind drifted to my son, as it often does when I find any square foot of space. If he had grown up - if he had lived - he would have had a disability so complex I would most likely have grown into an expert in medical intricacies beyond what even some doctors would understand. I would have been caregiving for his entire, beautiful life.

Somehow, the world spins on an axis, planets have moons pulling tides into shore, stars absorb and build every element on earth, and after the death of my son, I am a caregiver to my daughter.

The misconception of a weekend like this is that a parent needs respite from their child. It will be a long and winding and different day when I write about the systemic support not granted to a child - and by extension, their family - with Down syndrome. To describe the bone weary ache that comes with bracing against our worlds ableism, our world would have to actually name it. So instead, a parent is handed grief mislabeled as a diagnosis. Respite, for me, is relief from a world that won’t include my daughter.

I went for a run on the second day, and as the wind crested white tips off ocean waves as far as I could see, I saw my son. The grief from his death has informed everything in my life that came after, and I recalled the months of isolation that followed his loss. Often, people could not relate to me, the life I was living, the feelings in my chest or the words I spoke. Often, people stayed away.

And often, people would say, ‘I can’t imagine your loss.’

As I ran along the ocean, I realized that sentiment is similar for a parent to a child with a disability. We feel alone a lot; we feel unrelatable. People assume we have lost something - someone - when our child arrived.

People can’t imagine this life.

This life. So rich with happiness and cultivated joy. This life is so clearly full of love.

This life is not the reason a caregiver needs respite.

When my son died, I heard these words from almost everyone. They were a way to acknowledge my hurt without dipping too deep into the abyss themselves. These words were an off-ramp from facing the reality of what my life now encompassed, a way for people to u-turn a conversation back towards something more manageable. These words were a glossing over, a way to keep believing what was underneath was too hard, to unimaginable to imagine.

I so deeply want the world to see my daughter's worth, feel her vibrant colours of complexity and curiosity, and welcome her with open hearts and wide arms. I so badly want strangers to open their eyes and witness the joy of her life.

When my son died, I wanted people to witness my broken heart. To hold it without wishing it away. I wanted to be cared for, to be held and rocked. I wanted someone to hold my pain and name all my shades of blue as beautiful. I wanted people to imagine my loss, just like I want people to imagine my life as a caregiver. I want the world to hold the goodness of my daughter without wishing her away.

When I sit down to write about my bright and mysterious little girl, the words tumble out of me like a stream that has finally found its path down a mountainside. But when I write about my son - my grief and forever cracks - the words get stuck. I can never put them in order correctly. An entire book could never contain the love that was birthed alongside the grief and the story of my son.

Sometimes, I turn words into poems—short sentences that encompass a magnitude of feelings. At the respite retreat, I wrote this one. I wrote about the death of my son on a weekend away that arrived through my daughter's disability because the two of them—her and him—will never disentangle. I am a parent to them both. And I suppose that makes sense, that I would drift back and wish for this kind of tending, this kind of being cared for after my son died, at a weekend aimed at caring for the caregiver.  I wrote a pulsing, aching recognition of what it is to care for someone meaningfully, to witness them fully and what it is to stay in the room with grief and watch it build someone new.

A poem.

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I can’t imagine…

But please, let me try. Can I rake the leaves off your lawn? Wipe the grass clean of rot, make space for air and buds to bloom. Can I tiptoe through your kitchen, can I warm your cup each time it gets cold? Can I throw out the wilting flowers? Can I spare you another dead thing? Can I turn down the sheets of your bed, make you a cocoon to sleep, shift, shed. Can I lay on the floor with you? Bury my cheek against the splinters of wood, let me feel the way grief consumes, how it rips at guts and leaves you open. Can I hold you while you break? Bone and blister of hurt. Can I stay to witness the building, the way you stand up again, turn to face the breeze. Sun rising, back bent, heart new.

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Thank you for reading.

Katie

Xo