A few times over the past few weeks, A. has been talking about the nursery school he used to attend, recalling the things he liked most about it there. The other night, while I was tucking him in, he said to me, “At Black Lives Matter, we had a big sand table.”
That’s right: he thinks that his school was called “Black Lives Matter.” I haven’t corrected him.
The reality is that he attended our synagogue’s early childhood center, which was housed at the nearby Unitarian church. Each day he would see their giant yellow BLM banner as we walked into the building. One day, he asked me what it meant. Which sparked up some great conversations about race and racism. But you know, on a 4-year-old level.
There’s so much going on in the world right now—so many steps I would like to take to make it better—and yet most of the time I’m just trying to get through the day (and more so, the night, which is interminably worse). So I’m glad that my child believes that Black Lives Matter runs a lovely, inclusive preschool that promotes child-driven play. It makes me feel like at least we are doing something right.
I haven’t been writing much lately. It’s hard to know what to do with everything, and I often don’t know how put it into words. All of these things that are happening in our own little family—our daughter who lives on a tube, whose medical needs seem never ending. And then, what is happening within our country.
The rise in hate crimes, hate language and hate laws is overwhelming. And at the same time, yes, in response people are joining together from different backgrounds, cultures and religions to promote social justice and peace. That’s exactly what we need. And of course, more than ever, what our children need from us.
I’d like to be doing more. To be out there marching in the streets and organizing. Publishing more writing that pushes for tikkun olam (working to repair the world).
And some days the best that I can do is just to not smell like puke before I leave the house. Other days the best that I can do is to convince myself that, yes, I can do this. I can get up again and again and care for my girl because she needs me, even though I’m worn down. I’ve caught what may be my 5th nose-running, body-aching cold this season, and sometimes it feels like it’s too much.
E. has been doing a lot of puking. She had a brain and spinal MRI a few weeks ago— everything is the same, with no need for any additional surgeries at this time. She has these times where it pops out of nowhere, the vomiting streaks, and we don’t exactly know how or why or what is going on. The doctors don’t fully know what’s going on either. Sometimes, when things worsen, and they don’t know how else to explain it, a medical provider suggests that she might have caught the stomach flu. I’m not a doctor, but I don’t think the stomach flu lasts almost an entire year.
She still doesn’t eat much of anything, although when she mouthed a piece of Cap’n Crunch french toast the other morning, my heart soared. Most moms that I know are actively trying to avoid that type of food for their kids. But if my girl ate Halloween candy for breakfast (in March!) or even an old cracker off the floor, I would be thrilled. The longer she goes without eating, getting her calories solely from the feeding tube, the harder it is to get back to it.
There’s a heaviness that we live with; it doesn’t surprise me as much anymore.
And also, somehow, we moved. It’s a little bit country out here, even more than I anticipated. I love it. We can see the sunrise in the morning out the front of the house, and the sunset from our kitchen window. It reminds me of a small town in Vermont, in all the best and worst ways (e.g. snowmobiles and dogs wandering off-leash, and yet, a rare friendliness and charm). Mostly, it’s peaceful and even better than I thought it would be.
Now, when I’m up in the night to soothe E.’s cries, I can look outside and see the big dipper, clear as anything. Reminding me of all of the cosmic, unlikely things that people have been reminded of, since and beyond forever.
At a recent visit to the gastroenterologist, after gathering an update on E.’s status, she proclaimed, “We don’t do miracles here.”
The good news is I’m not looking for a doctor to give us a miracle. I’m (mostly) grateful for the medical care E. has received, but I’ve learned that’s not generally where the miracles come from.
Despite everything that could hold her back, our daughter has learned how to stand on her own two feet, with the help of a couch or something, anything, to lean against.
When I watch her pull her tiny body up, again and again, determined in her bowlegged stance, it pulls me up with her. Almost every time.