Lucas wrote a poem recently about what it’s like to have MTM. He structured it “same/different/same/different.” He wrote what is similar between his life and yours, and then what is different. I’ve been thinking a lot about that same question as we move into such intense isolation and unknown, comparing our life in the first year with baby Lucas to this new moment of quarantine.
Same: the falling/sinking/groundless feeling of not knowing what the future holds. Knowing it could be so scary, and unable to imagine the future. Needing to hunker down, rely on others while mostly only seeing the people we live with.
Different: we are not alone in our fear and isolation this time. Before, when we left our house it felt like stepping out of a vortex, seeing everyone else going on with their lives as if the world hadn’t changed completely. This time the weirdness pervades everything.
November, 2009. Finding joy during a long, tense winter.
I keep thinking about how hard our first year was – the adrenaline, the work to stay vigilant and to learn how to clear Lucas’s tiny airway the moment we saw signs of distress. And yet, despite how hard that time was, I also have a weirdly warm nostalgia for our first winter home with Lucas. Burke and I were forged in that fire – we became parents and we got closer to each other, got to know each other’s strengths and needs, held each other through the scariest days of our lives.
Back when Lucas was born, though most things were beyond our control, we could work to gain a competence that would give us some actual advantage in keeping our child alive. If we learned the suctioning techniques, learned his signs of distress, remembered the order of emergency protocols, we had a better chance of keeping our tiny, growing baby alive.
This time it feels so different. Although I’ve never lived somewhere with regular hurricanes, I keep imagining that this is what it must feel like when you’re waiting for a big one to hit, but now extra slow motion. There are things we’ve done – bought tons of groceries and stocked up on medical supplies and made extra hand sanitizer – but ultimately we are all just waiting for when this virus really strikes, and doing what little we can now to mitigate its impact.
It has felt good to have so many people checking on us. We still don’t know for sure if this will affect kids like Lucas any more than the average kid, but we hear from doctors that kids who are medically complex like Lucas in China and Europe are coming through ok.
And so in some ways we are facing a similar disruption to our lives as almost everyone else. We waiver between worry about our kids, worry about how we would care for our kids if one or both of us get sick, worry about our friends and family. And then, when we look up from our immediate circle, we worry about the world. How is it possible that we’ve built a global economic system that already had millions of children without enough food to eat in the U.S.? And now, a system that is so utterly unprepared to meet most people’s basic needs when we need to slow down?
To stay hopeful and keep ourselves out of the spiral of anxiety, we are purposefully turning toward hope and joy in this moment. We are donating to organizations trying to meet so many urgent needs, and we are moved by many people’s incredible generosity. It’s exciting to see the creative webs of support, from parents groups to disabled folks and allies checking in on each other and sharing resources. There are people leading campaigns to make sure we care for prisoners right now, whether it is getting massive sanitation and public health teams in to prisons or simply getting people out of prisons quickly. And there are the small acts of kindness: a neighbor who answered an online plea for a thermometer from someone who was diagnosed with Covid-19 yesterday. Last week teachers showed up at closed schools with food even before the district was even ready to provide lunches for students. Italians are singing to each other from balconies.
Ida and I took a birthday cake to our dear friends Susie and Ezra yesterday (celebrating an adult birthday and a first birthday!) and managed a porch handoff with social distance. Ida made goofy faces at Ezra from nearly six feet away and made him laugh and laugh, the sweetest growing-up baby laugh.
Our new weekday routine involves a morning “circle time” followed by a meeting to plan our day. We take turns leading each day, and so far we’ve each led one day. The facilitator leads a song, then a check-in about how each of us is feeling, followed by a “lesson.” (So far we’ve had lessons on Dolores Huerta, cats, Marcus Garvey, and our family tree.) Then we talk about what each of us wants to do and how we’ll help around the house that day. And then we go out for a walk and I again think to myself, thank God it’s March not December.
On the day Ida led our morning circle, she started check-in with herself. “I’m feeling bitter sweet,” she said. Her “bitter” was likely because I forced her to brush her hair a little, not existential worry about the state of the world. But I love that she is so wise, already.
When I think back on all we’ve written on this blog, I think our most recurring theme is this: things are really hard sometimes, and we also are so grateful. Often at the same time.
We had taken a break from blogging much, but I think the fact that this time calls for creative and online connection means we may be back here more. Thank you all for the ways you are staying connected – with us, with elders, with people living alone. We send you our love, out across the country and across the street.
And here’s Lucas’s poem:
MTM
Different, In a wheelchair, vent, suction machine
Same, Loves tech. and music
Different, With a nurse and aide every day at school.
Same, Has a cat named Raven.
Different, Adapted computer mouse.
Same, Wonderful family RV trips every summer.
My life is AWESOME!
