This is the first in a series of blogs written by members of Keshet’s community for Jewish Disability Awareness, Acceptance and Inclusion Month.
by Jenna Ottenheimer
“She will almost certainly have intellectual disabilities.” I remember the day Maya was diagnosed with Williams Syndrome like it was yesterday, even though it was seven years ago. Maya was two months old and we were at her cardiology appointment. The doctor diagnosed Maya with multiple congenital heart defects which would lead to her needing two open heart surgeries in her first year of life. Finding out Maya would need these surgeries wasn’t devastating compared to learning she would face lifelong challenges with education, socialization, emotions, and becoming an independent adult. I was not okay, and it took a long time for me to escape a very deep depression.
As the years went on, I fell more and more in love with Maya. They say a mother’s love is unconditional, but I’ll admit that it was difficult to bond with my child as I mourned the loss of who I expected her to be. Maya is not who I envisioned as my first-born daughter. She is exceptional in so many ways. She is the most friendly, happy, empathetic, and optimistic person I have ever met. If someone could be born with the ability to only see the glass half full – couldn’t I see it too?
Maya has brought so much love and light to our family. She has introduced us to people we would never have met, and taken us to places we would never have been if she didn’t have a disability. Very early in her life, Maya led us to our Keshet family. When Maya was just one, we went to our first Keshet Rainbow Banquet. As the tears pooled on our dinner plates, we knew Maya would have a forever home at Keshet. When Maya turned three, she began the first of now four summers in a row as a camper at Apachi Day Camps with 1:1 Keshet support. Camp is not only the most exciting and fun two months of Maya’s year, but it is where the love we have for Maya is celebrated by everyone. Keshet was and always will be where Maya is included and accepted for exactly who she is.
February is a very special month for us. Maya was born in February. It is Jewish Disability Awareness, Acceptance, and Inclusion Month (JDAIM) as well as American Heart Month. It is our chance to share Maya’s story with others, and to connect with families who may be in the dark place we were seven years ago. It is an opportunity to show appreciation for Keshet, whose mission is to love, accept, and include all individuals with disabilities. We are as thankful for Keshet as we are that Maya is in our family, and look forward to many happy years of Maya participating in Keshet’s activities and programs.