Since E. was born, we’ve had some unfortunate firsts. As Cedar and I often say when referring to these events—in a attempt to add some levity—baby’s first. Things like baby’s first vomiting streak in the middle of a dinner party. This led to baby’s first pneumonia (and later, second and third).
A few weeks ago, we got baby’s first walker. A real walker, not a toy that lights up or plays a children’s electronica version of Mary Had a Little Lamb. Our baby’s walker is a metal one identical to the kind your gramma might have, except a whole lot smaller. It’s very cute and also slightly heartbreaking, if you let it.
The latest: baby’s first botox. Yep, botox.
E. had the procedure in early July, injected in her intestines. It’s an experimental treatment to reduce her vomiting.
We had to put her through another round of anesthesia. As I stood next to her in the OR, stroking her cheek while the doctors sedated her—her nose and mouth covered by a small, clear mask, her eyes, eventually, rolling all the way back like they do.
She cried and cried while I tried to soothe her, and I did what I do best—pretending it’s all very fine and normal and matter of fact. And then, walking back to the OR waiting area, I thought about how incredibly unfair everything is. Things I think about a lot. Her life, this world, other children who have more invasive medical treatments, or much worse, the children who have no treatment or care whatsoever. And then, all of the rest of it, like racism, oh my G-d, which is one of the greatest injustices of our time (and for hundreds of years), largely ignored by many who have somehow convinced themselves that it has been resolved.
If you spend a lot of time at a children’s hospital, or possibly any time at all, this becomes glaringly clear.
Then I started to cry because I’m tired and yet very much alive and there is no absolute guarantee that any of us will be at this time next year. In those moments (and most), I want to do more, be more in control of, basically, anything.
And in our stardust speck of the woods, a few weeks later, E. is somewhat improved. She came through the procedure the way that she usually does, with the sweetest grit I have ever seen. That smile, which makes just about any cashier grin and wave as we wait to check out of the grocery store. Those eyes, which light up again approximately 15 seconds after she has been stuck again retching and gaging and sweating.
She now can play on the floor with her brother, she can scoot around squealing among a gaggle of screaming children, and sometimes there’s no puke in sight. And sometimes the carpet is covered in vomit, just like old times.
Overall, it is hopeful.
Yesterday, in a flurry of nostalgia and maybe even something close to bliss (I had just finished cobbling together a bouquet of plants found in the backyard) I pulled my old favorite bread-making cookbook off the shelf. As I turned the pages, I could feel the grit of flour and cornmeal.
I haven’t baked hardly anything since we moved here to our new house, back in February, when the ground was covered in ice. I’m not counting things like turning a store-bought baguette into garlic bread. That doesn’t thrill me like something created from scratch, although I love the hell out of warm garlic bread dripping with butter, don’t get me wrong.
I used to make something new each week. Nothing terribly fancy, because fanciness does nothing for me. What I like the most are simple things, like making rhubarb crisp at the beginning of spring.
I’ve realized something that I’m really not proud of. I’ve given up too much, caring for a child whose needs are exceptional. I’ve been moming so hard I’ve relinquished many of the best earthly pleasures.
In general, not just with my baking habits.
I’ve given up all kinds of things, more than you may even want to know about. Things like eating longer meals and praying when I want to pray. Whole weeks of sleep (if you string the lost hours together), but that’s obvious. Old friends that I adore but just can’t seem to find the time to see. Don’t even mention brunch or happy hour. Please, just don’t.
This is embarrassing for me to admit. I’d like to be all balanced and self-actualized. And it would be nice if you thought of me that way.
I’m taking some of it back. A little quiet each day, a little more space to do what I want to do. Times when I’ve been holed up in bed writing, even when my children are in the living room and wish I was playing endlessly with them on the floor. If you know me, you know that I adore my children, but I don’t really like playing on the floor.
But I do like and frequently even love growing flowers. I have been doing a lot of that lately, even though quite often it’s just me and the mosquitos out there as the light fades and day gives it all up for night.
This world is unfair, that’s for sure. There’s a whole lot we could say—and more importantly, do—about that, and we should.
We have a responsibility to care for each other, to tend to the sick, to make this world better than how we found it.
And then, sometimes, taking a break from these responsibilities is the most liberating thing. Every once and a while, the best way to start the day is to pull the covers back up and fake sleep, hoping that breakfast—and more ideally, a sea change of social justice—gets going regardless.
Photo by Marc Kozberg