By all accounts we had the perfect life. I met my husband the year after high school and we were married by the time I was 20. We traveled the world together, living and working in truly exotic places. My husband is a doctor and he worked for the Royal Australian Flying Doctor Service, which allowed us ample opportunity for adventure. After living in four countries and nine cities, we won Green cards and came to New York to start another adventure. We became very active in the community, hosting thousands of guests and enjoying life in NYC to the fullest.
Then we had two exceptionally cute kids (I am their mom, and they are exceptionally delicious to me). We have a great marriage and family. Many of the singles that we work with through our group JICNY have this “when I get married I want a life just like the Samuels” mantra.
On February 25th, 2008, our third baby was born and we broadcast a message to our 8,500 plus database announcing the arrival of our perfect princess. Two days later we received a bombshell when the doctor raised suspicion that our perfect princess had Down syndrome. 48 hours after that, chromosomal studies confirmed this fact.
We were so overwhelmed as many thoughts raced through our minds-from “wow!”, to “why us?” to “what will life be like?” and simply “Oh my God, please help!” Within a short while of hearing the news, I came to the conclusion that God had sent me this baby for a reason. After two miscarriages between Temira, my second, and this baby, I felt sure God wanted me to have her. I knew that unless we embraced this baby, our life would be a lie. I looked at my husband and said, “We open our home to the lost, the lonely, the searching, and the challenged. If we open our home to strangers, how much more so should we embrace a challenge for Caila Sara, our princess? Because of who we are, God sent us this beautiful soul.” When we realized this, we came to terms with her having Down syndrome. Since then, she has only given us joy. Oh yes, parenting Caila is a lot more work. It’s sometimes scary, and more intense, but also intensely joyous.
I was asked to speak on a panel for a group of Rabbinic Interns. They are learning about special needs in the community and wanted the perspective of a parent. I caught their attention with my campaign, Caily’s World. I was happy to speak and share my story. Reflecting on what to say, I recalled the serious and sad looks of the pediatrician, the OB/GYN, the geneticists, etc. Even the books we were told to read only listed all of the potential problems for the baby. The list was never-ending; from major disease and heart issues to being flatfooted, short-sighted and having thin hair. Our family and friends were devastated. The most common responses were tears or “Oh, I am so sorry”. We even had a person ask us outright while Gavin was holding the baby why we did not abort. There was so much pain in the air.
Yet we were not devastated; in fact, we were not even sad.
We have had two beautiful years with Caily. Thank God, she has been incredibly healthy- hardly even a cold ever. She does not have anything on those awful lists that could make one wonder if they delivered a monster instead of a baby. Caily is beautiful, with long thick hair. She is engaging, playful, and full of life. She is the delight of our family, her school, and our community.
What I wanted to tell the rabbinic students, what I want to tell anyone who will listen is that they have the power to change the situation. Imagine if people around us all assumed that life could still be amazing, rather than just assuming it’s awful. Imagine if the geneticist walked in and said to us, “life does not have to be perfect to be wonderful.” Caily has taught me this lesson and I will continue to share it with those facing challenges ………… and those who are unintentionally creating them.
Originally Published: April 26, 2010