It Isn’t Perfect


My word for 2017 is grounded. Not like, you’re grounded, although there are certainly days when I basically am.

But mostly, I mean grounded like the good kind. Like my feet are on this earth. Like I’m grounded in faith and ever-increasing amounts of hope and, at least some of the time, calmness.

Years ago, Cedar introduced me to the concept of the word of the year. In short, it’s what it sounds like: choose a word that defines what you hope your year will be about. Way before we had children, back when he was purely self-employed, Cedar picked the word luxury. Which he defined in a simple way, like walking over to Rustica a few times a week to get a latte (and probably, if I know him, a pastry), and more importantly, spending his time in a way that was meaningful. But by the time taxes were due, he realized that he really needed a new word. And that word was austerity.

Your word can change as the year unfolds, for better or worse.

This week E. got braces for her ankles. The orthotics are supposed to help her advance towards standing and eventually walking. So, good. I’m making a conscious effort to try to be more matter of fact about these interventions, especially at the appointments.

When I’m not able to be matter of fact, then I cope by cracking semi-inappropriate jokes. Which is any kind of joke at all during a serious medical appointment. It tends to go over better than you might think. And E. copes with the endless office visits by flirting with the nurses, providers and other patients. She has the best attitude between the two of us. By a landslide.

The orthopedist told me that after our last appointment, on his drive home, he thought about E.’s overwhelming sense of joy earlier that day, and it brightened his commute.

Hearing about how that interaction mattered to him, even in a fleeting way, made me feel connected to something beyond our little struggle. And that’s what I long for most right now. To be a part of something bigger.

We just got back from two weeks in Palm Springs, where my family used to vacation when my grandparents were alive. I loved it back when I was a child, spending the whole day outside in December, making lemonade fresh from the fruit on their lush trees. My brother and I used to swim all afternoon in their pool until I got, without fail, a terrible sunburn.

I love it now for many of the same reasons (but with copious amounts of sunscreen). Our extended family converged in a sunny, sprawling house we rented. We had multiple family dance parties in the living room on the slick tiled floor, with everyone going for it. I don’t know what’s better than that.

Spending time in California always heals me in some way. I am finally rid of that epic bout of pneumonia and so is little E. In some ways, she is thriving. She’s been saying all kinds of words with her soft bubbly voice, and at times, can even string two words together.

When she says “happy baby” I am elated. I know most parents think their kid is a genius, but when you’ve had doctors instruct you to expect very little, that your child may likely suffer from severe cognitive problems, every syllable is a triumph.

But E.’s puking continues, with some peaceful and then more difficult days. Very often, I am wearing some kind of stomach acid. And the need to keep her calm, to eliminate crying, because generally crying leads to her throwing up, well, it can be excruciating.

A few nights ago I sat for nearly two hours against her crib, letting her pull hard on my hair, because that was the only thing that could keep her settled.

Earlier in the week, I took E. to complete another swallow study to find out if she can safely progress with eating. I knew the radiologist at the hospital from our many past visits. As I worked to coerce my girl to eat barium and then have a series of x-rays, I tried to stay present. What a strange thing, feeding my sweet daughter a radioactive substance, exposing her to all of that toxicity, again and again. For the sake of her health.

Of course, every once in a while, I still have to cry on the way home. It’s not anything but grief. Grief for the life that I thought we would have. For the vision of how I thought it would be, easier and healthier and calmer all around, which was false from the beginning. We never know what the future will bring, and I don’t know why I assumed that things would basically be, in short, perfect for our family.

Nothing that is real is perfect. And I am reminded of this constantly, at all hours of the day, and sometimes throughout the night.

2 thoughts on “It Isn’t Perfect

  1. Oh my, how I hated those swallow studies. And the CT scans. And the chest X-rays. We always said our Sammi would end up glowing in the dark. It turns out that she likes glow in the dark star stickers more than the average kid, and her whole room is lit up with them at night. It’s either irony or the power of intention. I hope little E lives in the glowing too.

    Liked by 1 person

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