My third child was diagnosed with a rare syndrome at age 2—when my fourth baby was just 3 weeks old.
My son’s syndrome is called Sotos syndrome. It’s an overgrowth syndrome (so he looks older than he is) that also causes developmental disabilities (so he acts younger than he is)—an excellent combination, if your goal in life is to be accosted by strangers in Target.
At any rate, the stress of having four children, including a baby and a child with a label, was overwhelming, so one day, in one of my exhausted free hours, I went to get a haircut.
I must have said something stupid like, “Surprise me,” which is just not something you say to the person cutting your hair. I was surprised, all right. And horrified. And mostly bald, with only a few little wisps of hair. I headed straight to the dollar store across the street and got a bandanna to tie on before I even got in my car to drive home.
“What the hell happened?” my husband asked when he saw me. “What did you do to yourself?”
For the next several weeks, I kept a kerchief on my head at all times. I kept it on my bedside table and put it on before I got up to brush my teeth and only took it off when I was in bed for the night. And people in my Modern Orthodox community—where many of the women cover their hair for religious reasons—noticed.
At the time, I felt like a bit of outsider in that world—I grew up Conservative, married a Modern Orthodox Israeli man, and thought of myself as Modern Orthodox—except when I was around other Modern Orthodox people. Then I felt like I was constantly making mistakes and doing things wrong. I mean, I certainly wasn’t serving meat meals on dairy plates, but I figured they could always tell I didn’t grow up in their day school world.
At some point, my hair started to grow back, as hair does, and I could bear to see my reflection in the mirror without wincing.
But in the meantime, I was still dealing with the new reality that my son was always going to have Sotos syndrome, that my dreams for him would have to change. And I wanted, most of the time, to scream.
And so I decided to keep covering my hair. My logic went like this: When you are depressed, some advice tells you to smile. The physical act of smiling can cause certain chemical changes inside your body that actually make you happier.
I was depressed, yes, but I was also very, very angry. At God, perhaps. At the world, certainly. I thought that if I dressed the part of someone who believed, if I paid attention to the physical, I could get back some of the spiritual that I was having a hard time finding.
Did it work?
It did—but it took a long time. Years went by. I no longer felt like I was “less than” other Modern Orthodox people. I learned that everyone has rules they keep— and rules they bend. I grew comfortable in my own skin. We moved to Israel, and I still covered my hair. I started attending synagogue with my husband. I started to let myself feel.
And then my son—the same son with Sotos syndrome—was diagnosed with leukemia.
Boy, did that make me miss the days when we “only” had special needs. I mean, really, what’s a little developmental disability between friends, right? Suddenly my kid’s life was at risk, and all of that anger came rushing back.
A week later, my mom was diagnosed with cancer, too. It was a crazy, surreal time when I felt like someone had filled my lungs with water and I was fighting desperately for air.
A week or so later, I was on the phone with my mother who, as a reminder, had cancer. We were talking about my son, who also had cancer. I told her, “When God does what I want, we are BFFs. I’m all heart emojis and likes and LOLs. But when He messes with my kids—man, all bets are off. I don’t even want to speak to Him—and I’m sure he doesn’t want to hear what I have to say.”
And then my mom said something that completely changed my way of thinking. She said, “Abbi, do you really think you are so special? Do you think God hasn’t heard it all before? Do you think there is anything you could say that is so terrible He wouldn’t want to hear it?”
Yep. I am that lucky, to have a mother who, even when she was fighting cancer, had it together enough to offer me that wisdom. (She also went to the gym regularly while she had cancer, so she’s obviously insane. And alive and healthy.)
So. My son lived, and my mother lived, and I am grateful every day. I work on the physical, the external, and I find my own way towards the spiritual. I do still cover my hair, not because I need to force myself to feel something, but because I do feel it, every day.
