My grandmother lived to 100, and I always admired how this truly singular woman led our family with strength, grace and humor. At the time of her passing, I was feeling anything but graceful and strong. I was not only struggling with losing her, but with the challenges of raising and accepting my special needs child. My rabbi, Baruch HaLevi of Congregation Shirat Hayam, counseled me to “carry my grandmother’s fire” forward in her honor and memory—and to remember that my son, and every other child, is a “spark of God.” My rabbi’s words were comforting and empowering. In the time that has passed since those difficult days, I learned that every child, including my son, truly is a spark of light.
There are many moments of sadness and anger when parenting a child with special needs. Every Individualized Education Program (IEP) meeting. Every doctor’s appointment. Every day that my child took two (yes, two) hours to get his shoes on and get comfortable so we could leave our house. There are also the times when he is too nervous to join his flag football team, even though he really, really wants to play, or when he can’t go to a birthday party because the venue is just too noisy and overwhelming. And the most heartbreaking of all: when all his classmates are busily making plans after school and no one invites him to join.
In spite of these obstacles and heartbreaks, I feel truly blessed to parent my son and am thankful for him exactly as he is. It is my son who gets the most laughs at our dinner table. It is my son who gives the most unsolicited hugs in our home. It is my son who has the courage to face a world that is so unpredictable and confounding to him each and every day. I am also grateful for what I have learned from him. My child has taught me to notice the person in some way on the outside, whether on the playground or in society at large. He has inspired me to pursue, with as much vigor as I can muster, my volunteer work with CJP, helping those who may be struggling, on the margins, or in some way overlooked. And the truth is, before my son was born, I just didn’t understand how hard and challenging life could be for a family—and how important it is to simply be present. My son has taught me to look up, look around and pay attention. He also taught me to dig a little deeper to find a person’s true spark and essence, and to dig a little deeper to help others.
While I do have deep gratitude for my son and all he has taught us, and for God for giving him to our family, I am now challenged to use my knowledge that my child is a gift and to find joy in the everyday. I often still struggle to feel simple, open-hearted, carefree joy in the present without a layer of concern about what life has in store for him and the struggles and challenges ahead. I strive to enjoy my child and our time without the nagging worry, sadness and scrutiny of every action and moment—and what it suggests about his development and his future. He deserves, as does my family, to transform this challenge into first strength and resilience, and then into gratitude and finally joy.
Amanda Clayman is a family law attorney. She serves as the chair of CJP’s North Shore Advisory Committee and is on CJP’s Board of Directors. Amanda lives in Swampscott with her husband, Tom, and their two children, Anna and Max.