On Yom Kippur evening, eight and a half years ago, I sat in a Bet Shemesh shul. I still feel the phantom weight of a tichel (head covering) tugging my hair. That night it was a pink glittery pashmina. My hair was long, thick, and curly, and pulled into a tight bun underneath the wrap. I was passionate then. Passionate about the Torah’s truth and wisdom, the guidance it offered, and my focus on what I needed to work on and change. I was passionate about my new marriage. We were young, hopeful, smart, and sincere. I was most of all passionate about the unborn child in my womb. I was growing this little miracle in my body and, especially as a first-time mother, my life was completely pregnancy-and-baby consumed.
I had started davening, one hand gripping my machzor and the other resting proudly and protectively on my gigantic belly. A woman walked into shul with her daughter who obviously had Downs Syndrome. I distinctly remember (and I felt extremely guilty, as I stood before Hashem on the official Guilt Holiday) thinking ‘Please don’t let my child be like that.’ I’m being really honest here. I might get some judgment, but yes, I remember being that mom.
Is it shameful to remember that now? Now that I have a son who is high functioning, but clearly On the Spectrum? It’s definitely uncomfortable, but it was my reality then. Reality is the same, but my angle has changed. Yehuda Or was born, and I said: “I would die for him.” I have loved him so completely, that it was never a choice to “be able to handle a special needs child” because he is and always has been, my child. For a while, people have said to me “I don’t know how you do it.” I know that’s just an expression, but we all “do” what we need to do. Somehow. So many things in life are handed to us whether we like them or not. Having an ASD kid is a reminder of that constantly. I’m not talking about me. I mean for him.
Being his mother has pushed me to expand my sense of empathy, acceptance, and gratitude. This boy, with his endless voices, songs, and explanations, has a heart of gold. His toothy smile and big green eyes are so sweet, adults fall in love with him. Kids on the other hand… it’s challenging. When you have a kid that has always struggled with peers and rules, and at age eight you aren’t able to work because you need to get him from school every day, you’re past being sad that your kid officially has Autism. You just want your child to have a day without hurting someone, or without needing to be dragged out of somewhere, or without needing a change of pants midday.
I could cry for him. I could feel sorry for him. I could mourn the baby that was in my belly in my imagination, that Yom Kippur evening. Those words that he knew so young, his skills at building legos in the most detailed way… I could gather them into a pile of lost dreams. Or I can rejoice in who he is. He is loving and intelligent and has a family that believes in him fiercely, and that’s a better hand than many people get dealt in life. We all have our challenges. We all have our areas of dysfunction. Some of us bear the invisible scars of abuse. Some of us lose a parent when we’re young. Some of us suffer from debilitating depression. Those are factors in who we are but they don’t define us.
I feel like I have been running a marathon for the last five years, and I finally see a place to rest ahead in the distance. My Little Light is surfacing. He is figuring himself out, and that’s allowing him to figure life out. And isn’t that what we’re all doing?