In the past, bringing focus to Jewish Disability Awareness Month would have felt like any other part of my job. I would have recognized it out of a sense of responsibility and felt obligated to give other families a forum to share their experiences. However, this past year my son was diagnosed with an autism spectrum disorder—and suddenly awareness of disabilities was no longer another family’s story.
In the months after Eitan’s diagnosis, I was overwhelmed and panic-stricken. I couldn’t help but deny what this news meant for my sweet little boy’s future. I worried constantly about what the rest of his life would look like and struggled to reconcile this new reality with the dreams and visions I had for him.
And while I agonized over what this diagnosis meant for Eitan, I must admit I also spent many sleepless nights worrying about what it meant for me. I found myself driving along the highway, seeing cars with “Autism Awareness” bumper stickers, or hearing news reports on autism research or advocacy groups and wondering, “Am I one of these people now?” Do I need to join a group and get a bumper sticker of my own?
I never thought I would someday be the parent of a child with a disability—but suddenly I was part of a whole new community, and everyone else understood what I was going through far better than I did. The whole process reminded me a lot of coming out when I was in college over 20 years ago. While in that case I was the one changing the direction of my life, this situation felt very much the same. Once again I had to accept a new reality. Back then I felt as if I was simultaneously pushing away and pulling closer the people who shared my new identity, and I felt the same struggle to acclimate myself to what this meant for my future. It really was so very similar to what I am feeling now.
The Values Project value for February is, interestingly, joy, or simcha. I’ll be honest and say that it’s been hard to experience joy, pure and simple, in the past year. There are moments when we’re all together as a family, like on the beach in Provincetown, when I forget what we’re going through for a few hours. In these moments, I’m able to enjoy us as we are. I can watch Eitan play, being silly and goofy, singing and dancing, and not worry about whether I’m doing enough to help him become his best self. Those are the moments that remind me that pure and simple joy does exist—and that it’s my job to protect that joy from the dark cloud of anxiety and truly be present in it.