I like to write posts with silver linings, as much positivity as I can muster and also messages of hope. But I’m a little short on all of those things right now so instead, I give you my raw and unfiltered experience, in hopes that anyone else struggling might find solace in the knowing that they are not alone in this storm.
Our world is full of feelings right now. We may be experiencing different nuances of them but largely they’re all rooted in uncertainty, isolation and fear. For some this means anxiety and panic attacks, for others, holding their breath as bank accounts run low and then there are those trying to navigate the tangled web of past trauma, re-emerging at the hands of the COVID beast.
My own greatest challenges have fallen mostly into that last category. Although my pictures capture the highlights, most of the first 6 weeks has actually looked like me buckling under the physical and emotional weight of Oliver’s care as, in the absence of our support network, it’s been placed squarely back onto my shoulders.
This has looked like an abundance of tears, a tired fog that I just can’t shake and a tsunami of intrusive, dark and hopeless thoughts. It’s meant feeling massive guilt for my inability to single-handedly replace the team of aids, respite workers, therapists and teachers who make up Oliver’s village outside of this quarantined life. It’s meant a deep longing to be able to give him more and the awful feeling of having nothing more to give. And it’s meant coming to the realization that the noisy chaos of my usual world has tricked me into believing that I am further down the road of healing than I really am.
Processing through these things has meant long talks with/at my husband about my need for support. And also, brought forth by the continuous presence of these other humans, my dear family, a recognition of my need for a little motha fuckin space! And mostly, it’s required coming face-to-face with all the things from which I still run.
Our world is quiet now. It is still. And in the eerily silence of this stillness, Oliver’s disability is deafening.
In early March we traveled north from our Los Angeles home for a business trip which turned into quarantine in an enchanting and safe, yet isolated area. The tranquility of this place is a breeding ground for my psyches’ incessant chatter and its obsession with the demons of my past and present. And now, there is no running from appointment to appointment, fooling myself into thinking I’m OK. No, the only option now is to be still and feel it all.
In this beautiful environment, surrounded by snow-covered mountains, lush forest and fresh air, I see the limitations of my disabled child. His brother runs and plays, as children should, shrieking over bugs and lifting up rocks. He greets each day by removing every stitch of clothing and running naked into the woods. His gleeful delight in this forest playground warms my heart to its core. This is the life of which I dreamt for my family.
But as Nicco runs and plays, Oliver sits silently in his stroller or hangs heavily on his gait trainer, a captive of paved surfaces, watching the world go by. No change of scenery will ever change his disability and new surroundings only seem to magnify it. In fact, the places on earth which make my heart sing the loudest, bring with that song a deep sorrowful knowing that Oliver will never be free to explore them as we can. And soon enough, he will even be too heavy to hoist up onto our backs for the ride.
As the rest of us flit about thoughtlessly, exploring the magic of our new surroundings, Oliver sits still, patiently awaiting assistance. I wish I could give him more. I wish I could go back to the beginning, make different choices about his birth. I wish he could run and play with his brother.
But he can’t. He needs help with, literally, everything. And yes, here I could insert some kind of rainbow and sunshine platitude like ‘where there’s a will there’s a way,’ but I’m not going to do that because it negates the very real pain alive and well in my heart.
We can and will adjust to these life changes and I know that. If there’s one thing I’ve learned throughout this journey, it is that humans are wildly adaptable. But during this period of adjustment, I am struggling to keep myself out of the darkness that threatens my mind and the exhaustion that plagues my body.
The compassionate thing to do now would be to acknowledge the appropriateness of my struggle and offer myself forgiveness and love in this time of massive unrest. But what I find myself doing, now more than ever, is continuously raking myself over the coals for not being Further. Better. More.
I post things on social media about forgiveness, self-love and allowing your humanness to be acceptable for right now. They are all the things I’m trying to learn for myself- drilling them into my thick skull over and over again until one day, hopefully, they really settle in, not only to my head, but to my heart. We teach that which we hope to learn.
So for anyone else who needs to hear this today…
YOU DO ENOUGH.
YOU GIVE ENOUGH.
YOU ARE ENOUGH.
If you yourself, or anyone around you, is telling you differently, kindly tell them to fuck off. And if you feel like a shitty mom or shitty partner or a shitty human, please reassure yourself that you are not. You are divinity embodied in a human vessel. This here and now is, and in fact always is, only temporary.
There. That’s a message of hope, right? Look at that. It all came together in the end. Insert facepalm/crying/laughing emoji.
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