I was actually really shy BC - Before Caila. In 2008 on day 3 of Caila’s life, a doctor walked into the ward and asked the question that would change my life: “Did you do genetic testing?”
We were terrified of the diagnosis but we did not realize we would soon be defending Caila’s right to exist.
On day 4 of her life, a neighbor visited and said, “What - you did not do an amniocentesis and abort?” I guess not: I was holding Caila in my arms.
At age 2, we were locked out of the community day school her siblings attended. A school in one of the wealthiest zip codes in the world and accompanied by a basket of New York City services.
Our appeals to the board got us nowhere, and our rallying cry became, “We are not asking you to do what’s easy we are asking you to do what’s right.”
The final straw was an e-mail from a board member stating, “You chose to bring this problem into the world - don’t make your problems ours.”
My response: “G-d brought this child into the world. How you choose to treat this child is your choice!”
It was a freezing January day. As I walked outside, I saw a signpost with the words of the late Dr. Martin Luther King Jr: “We begin to die when we are silent about things that matter.”
At this moment, I realized I needed to find my voice and take a stand, not just for Caila but for all children with disabilities locked out of schools, communities, and synagogues.
We learn in the Ethics of our Fathers (Pirkei Avot), “In a place where there are no leaders, strive to be a leader.” When we applied to send Caila to a Chabad Preschool two minutes from my apartment, the principal asked me why I had chosen her school when my other children had not attended. I burst into tears and said, “Because the other school does not want her!”
Her response was, “Every Jewish child is entitled to Jewish education. She is accepted in our school!”
Such different models of leadership. When water is tainted at its source, it taints all the water.
This week's Torah portion of Pinchas, we learn powerful lessons about leadership. True leadership requires taking responsibility, caring about everyone, having empathy, being willing to stand up for what is right, staying open to learning, and being humble.
We all have opportunities to be leaders in our own worlds as parents, colleagues, managers, community leaders, and friends. We can all impact our world through our actions.