Lucas Camilo

Happy New Year!

Our winter has started off great. Which I don’t say lightly, since the dark and bone-chilling wet of winter is often really hard for me. But this winter has been great for all of us, even me.

As I sit down to write this I realize that I don’t actually know how to write a “things feel really good in my life” blog post nearly as well as I wish did. I feel like we often connect more when we share our struggles and challenges, when we ask for help, or when we tell our friends and family how much your support buoys us and gets us through. (Of course the other main thread on this blog is fun stories about our kids.) All those challenges and our need for support remain real. It would be hard to be too pollyannaish given what I’ve been calling the “objective conditions” of our life. Lucas still has a neuromuscular disease, a trach, a vent, a heavy wheel chair and an even more cumbersome power chair that we haven’t figured out how to make useful outside of school. Ida is still noticeably physically delayed, and we don’t know what moving around the world will look like for her.

And yet. Something has shifted recently that makes the ground we stand on as a family feel steadier, solid, and filled with love and joy bigger than I think I’ve ever felt.   Some of it is about Lucas and Ida – they’re both doing outstandingly well despite their limitations. And they’re both growing up into amazingly fun, sweet kids – Lucas expressively sweet and loving to the three of us, Ida beaming her only-slightly-devious grin almost all the time. And even though we don’t know what her future holds in terms of mobility, she is making great progress, and we’ve come to peace with whatever that means for her future. And some of this ease is related to my relationship with Burke – we’re more solid and connected to each other than in the haze of emergency and then sleep-deprivation in the months after Ida’s birth.

But I think there’s some other magical alchemy of acceptance/practice/perspective/snow/softening/slowing down/fires in the fireplace/good books and more time to snuggle that winter has brought me this year. I’ve been reflecting a lot in my yoga practice on the opportunities that darkness brings. When I say winters can be “really hard” for me, I mean they’re the time each year that I get a short taste of heavy, painful sadness, something that I think is probably like depression. As I write this, I’m acutely aware that winter has really just begun. But I’m going to write this anyway. (I’m standing up to the part of myself that says naming something good means I’m just inviting the other shoe to drop.) So here it is: This winter I feel a deep sense of peace and happiness. It will pass, I know, but I also want to take an imprint of it, something that I can etch into my cells so I can remember how this feels when I need it later.

This gratitude feels like abundance. My heart is so full that the usual things my mind churns over obsessively – everything from the major life balance questions to the annoyance that people walk on light, recently vacuumed carpet with their winter shoes on – all take a back seat for a moment to what is important. My family is well. We are doing our best for each other, and doing our best to live our values in big and small ways. And we have so much joy.

Yesterday morning we got back to our regular Sunday morning “bathapalooza” routine, with Lucas in his bath chair in the big tub, Ida in her baby bath on the floor next to him, Burke standing in his T-shirt and boxers in the tub with Lucas helping him play with his bath toys, me sitting next to Ida drinking coffee and being entertained by the whole bunch. Burke and Lucas started getting really goofy, and I started laughing. Lucas loves it when they make me laugh, so he demanded more silly performances from Daddy (they were doing impressions of whales breaching, which then became a double-duck breach, a quintuple duck breach… you get the picture.) Lucas started laughing so hard that he could barely get words out. In those moments, when its so funny it almost hurts, he sometimes squeezes out a half-hearted plea: “Daddy, you can’t do this forever!!” That’s how good this winter feels. Part of me wants to plead with the universe to make it last forever.

There are so many small but incredible moments over the past month that we haven’t shared here. Caroling in the dark and pouring rain with our family choir. A planets-and-dinosaurs dance party at Christmas with our family, and then a punk rock dance party with our friends Dan and Dana and Julian on New Year’s Eve.  Aunt Megan racing Lucas driving laps around the community center in his power chair.  Ida learning to roll herself across the room, usually making a bee-line for Lucas’s tubes.  Lucas delighting in “wumbers” and “C D B’s” (word games).  A family walk through Jefferson park to watch a winter sunset.  Lucas’s dinosaur greatest hits album. A glorious walk to the lake with Lucas on my birthday, with the snow-covered Cascades glowing on the horizon.  Ida’s first words. An accessible hike through a wetland in the snow. A dancing octopus and sea turtle at the aquarium.

Here are a few pictures of this joy I get to call my family.

Lucas is taking orders – let us know if you’d like a copy!