I was lucky enough to get a pedicure recently, which was pure luxury. I became so relaxed I nearly fell asleep right there in the nail salon, breathing in acetone and dreaming of what I had just read in People magazine. A fellow patron saw my choice of gold sparkle polish and said, “Good for you, unicorn!” She then flashed a big smile, with her teeth showing.
How did she know? I have, over the past year, developed a passionate, almost elementary school style excitement about all things unicorn. Each time I see something uni-related, I am giddy. If it’s at a store, I have to take a picture of it on my phone, because that’s my method of choice to avoid impulsive purchases. A glitter-soaked banner with matching paper plates feels inspired at the time, but I’m always glad that I left with a snapshot and ten more dollars to my name.
I don’t need to buy unicorn gear, because I live with a real one. If E. was an animal she would definitely qualify, even though I know, I know, they don’t technically exist.
Unexpected and rare—that’s our girl. A few days ago at lunch, E. started doing her signature dance, bopping her head from side to side. And then she turned to me and announced, “I got moves.” I laughed so hard that, of course, she repeated her new line over and over again, still shaking it.
And then, like almost anything, it became a thing of the past. “I got moves” was her signature phrase at a specific moment in time, and then it was gone.
The passing of time is so wild.
It’s been two years since we first got E.’s diagnosis, an uncommon genetic deletion. When Cedar and I got the phone call, we were out visiting family in Palm Springs, California. The doctor’s voice was stiff; he used very few words. We found out, during that five minute phone call, that her future—her functioning and development—was completely unknown.
After the phone call, I walked outside alone for a long time, past fences dotted with blooming bougainvillea. As the sun began to set, I called my friend Sara, sobbing. Then I laid down on a dusty hill outside of the house we had rented, looking up at a cluster of palm trees. My whole body ached, as if I had suddenly caught the flu. As if those iconic date palms would never seem quite as beautiful as they used to be.
I wish someone, anyone, could have told me then how E. would move me, and our family, in powerful ways. How this moment, which ended life-as-we-knew-it, would spark a kind of renewal.
Instead of all of the ways that having a child with special needs can inspire grit and joy, providers often focus on grief. Again and again during those early appointments, the subtext was negative. There was a disturbing implication, as if there are just two kinds of people: normal and abnormal. And that one is better than the other.
Some of this life—especially anything feeding tube related, all of which came later (the puking, hours spent in clinic waiting rooms)—wasn’t what we wanted. Yes, on many days, it is hard. And yes, there are losses, of which I’ve written plenty. But E. has brought with her many more gains.
Before I was knee deep in E.’s mind-blowing medical needs, my parenting approach was just this side of neurotic. A skipped nap was stressful, and a bout of strep throat made my heart thump with worry. I wanted everything to be perfect—the organic plum oatmeal baby food, the temperature of the nursery, my children’s manners at the grocery store.
Now, I’m just happy if we make it to the grocery store and no one throws up. A few days ago, I did get thrown up on at Michael’s because E. started to cry and if she cries she usually pukes. I didn’t have much time before work to freshen up. But luckily, all that I needed to do to “clean” my jacket was spray lavender essential oil on it. Smelled fine, or at least it did to me.
I’m like…none of us are in the hospital? Well then, carry on.
The details aren’t as important to me anymore, like the exact amount of screen time that my children encounter in any given day. Yes, of course, I want my kids to be learning and engaged. But does it all need to be stand out amazing? Is an extra episode of Paw Patrol going to be the make or break moment of their intellectual development?
I know other parents who are thoughtful about so many things, things that I don’t care as much about anymore, even if I should. One example: Halloween candy consumption. When asked what my plan was for my five-year-old son, I said, “I think he’s going to eat it. Or I will. Probably both?” When you have a toddler that cannot eat anything, fun size Snickers bars don’t feel like a stressor. I’m just glad that one of my children is able to enjoy one of the best things our world has to offer (i.e. chocolate).
In the two short years since we found our unicorn, all kinds of things have changed for us. During the dead of winter, we hightailed it to a one-story house closer to my parents with a view thick with maples. All the while, Cedar went on tour with a beautiful band, Bon Iver.
We visited the hospital too many times and the dentist not enough. I gave my son the reward of Cool Ranch Doritos for breakfast and then took him to lunch at McDonalds all in one day. It did convince him to cheerfully check out his new school. Turns out that “you can’t make me” can be amended with the help of corporate food giants. I’m not proud of that, but it is something my old perfectionistic self would not have allowed, not in one million years.
Our community has shifted, too. We found a village of highly skilled providers to care for our daughter. Now we have the good fortune (and health insurance) to have amazing nurses helping E.
Strangely, in the thick of the hardest months, a friend abruptly ended our decades-long sisterhood; I thought we would be in each other lives forever. Right around that time, I became closer with a few sunny, empathic women who showed up in such generous ways.
Throughout all of this, I rediscovered how much I love Cedar, again and again.
And my baby—the one they said may never ever—well, she learned to walk. She wears hot pink sneakers to hold her silicone knee-high braces in place, and as she totters over to me she sticks her arms straight out for balance. Most of the time, when I look at her I don’t see something lost. I see—against all odds, in this fraught, frenetic world—a tiny bit of magic in everyday life.