We are living in some pretty crazy times right now. As teachers and parents scramble to figure out the intricacies of e-schooling (like how to properly mute the zoom lesson so the class doesn’t hear how often you employ expletives in your household), and as the COVID numbers continue to rise, the roller-coaster of 2020 speeds on without regard to the humans who are struggling to hold on for their lives.
I’ve made no secret that all of the ups and downs have triggered some pretty heavy depression for me and part of that has presented as extreme fatigue and lethargy. Like anything else in motherhood, whatever we are going through, ultimately, trickles down to our kids and the quality of care they receive. This added layer of mom-guilt has been weighing heavily on my already overloaded mind, as I painstakingly drag from the depths of my being, the motivation to include and assist Oliver in everything we do.
As we picked apples today from our tree, an activity that I would normally enjoy but today had to force myself to do, I watched Oliver slouched in his stroller, again, his eyes fixed on the apple picking going on above him with a look of hopeful anticipation quietly emanating from his eyes. I took a big deep breath and walked over to his stroller, unlatched the brakes and dragged it to a place where he could reach some apples. I asked my husband for the picker and also asked him to take this video, intended to post to Instagram today as a sort of… I don’t even know what… Like… Look at this! Look, I’m being a good special needs mom! Look at how much Oliver is included in life! Look at how effortless this is for us! See! Brain injuries can’t stop me! #nolimits Ugh. That’s just not the truth. Especially during these times, while we are living in a fully virtual world, truthfulness on social media is critical. We are looking to each other for support, connection and understanding, not lies, selective truths or one-upsmanship.
So, here’s the truth of our today. This video of us happily picking apples, Oliver fully included, with smiles on both of our faces is one TINY snapshot of our day. But that’s what the world will see because that’s what I’ll post…. And that’s what they will think is truth/compare themselves to/ judge us by.
In reality, today’s inclusion looked like 4 apples… 4 measly apples picked during an hour-long harvest session, and requiring every spare ounce of effort I had to pry his tiny fisted hands apart one finger at a time, shove the handle in between before they snapped shut and then attempt to keep them attached while we fished in the air for apples. Inclusion takes effort. It just does. And I know a lot of caregivers are feeling the strain of doing enough of it, all alone right now.
Last winter, before the world came crashing down, I posted a picture of our family playing miniature golf and wrote some uplifting words about how inclusion had finally fallen into place for me and how it was no longer a struggle to help Oliver participate in everything we do. What I didn’t realize at the time was how much the support network we had in LA was allowing me that energy for inclusion. Sharing Oliver’s care with a team of people gave me enough time to recover and refresh before my next round of giving. The COVID world, and our move, pulled that rug of support out from under me and, well, I fell flat on my face, humbled once again by the real challenges of the HIE life.
But hey, that’s how this path goes. It’s not a straight trajectory, but more of a winding road that circles back time and again, illuminating the blind spots you might’ve missed the first time through. So, this time, instead of self-congratulation and in spite of the temptation of self-flagellation, I’ll chose integration and an opportunity to encourage others along the way.
Whatever motivation you dug out today… whatever inclusion you managed… or even if you just survived the day… Please know, (as stated below by my favorite game, Cards Against Humanity), You Are ‘Being a Motherfucking Sorcerer’ right now.
We are being forced to live a life completely foreign to that which we’ve always known, without the support we’re used to and under the weight of some pretty unrealistic expectations. Pushing the boundaries within ourselves to innovate, adapt and physically and emotionally withstand far more than we thought we could. And guess what? We’re doing it. No matter how messy it looks, we’re doing it and some days, that seems almost superhuman. So, instead of focusing on all of the ways we aren’t on top of our game right now, maybe we can just cut ourselves a little slack. Maybe we can lower the bar a little as we lower the masks of perfection we hide behind and just get REALLY REAL. Times are tough. Mental health is shaky. Confidence is shaky. Insecurity and anxiety are ruling the collective consciousness. And whether we allow others to see it or not, most of us are struggling, in some way, to get by.
Right now, our virtual world is our only world and that makes it even more important that we come here to tell each other the truth. We need to let our guard down and come together in our humanness, reclaiming this platform with the bravery to truly be seen.
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