I recently went through a very stressful time. A combination of challenges and stressful events colluded to dent my polished things that made the “Supermom” facade. I felt like an elastic band about to snap.
In the last few months we had a major flood from a burst pipe in our apartment, followed by a renovation that required us to move out. Gavin started a new job requiring him to travel almost every week. I am still figuring out life in Israel which is a huge stress for me. I then took on way too much as a non-paid volunteer, running too many Jewish International Connections events in New York, Jerusalem and Tel Aviv. I work on my paying work and am writing my book. I also try to live my dream life - traveling to exotic places in a cost-neutral way -- meaning I rent my Jerusalem apartment on AirBnb and lastly, of course I like to party and have fun.
Then another major stress hit me from left field to add to the mix - a seriously misguided, pseudo-religious zealot who disagrees with my community events started stalking and harassing me and literally was sending me death threats!
And the last straw; an unexpected financial issue with JICNY, my non-profit organization -- I found myself saying to my husband: “When bad things happen I ask G-d, why?”
When Caila was born I had many conversations with the Almighty – “Why me? Why us?”
By the time Caila was one year old, I recall going to the Kotel, the most holy place in Judaism. I was a little nervous in the lead up to our trip to Israel as I was still a little angry with G-d and I kept thinking about the talking to I was going to have with Him. Why me? Why us? Don’t we do enough for the community? What did we do to deserve this? People say the reason we are chosen to parent a special needs child is because we are so strong. We are not strong we had no choice but to rise to the occasion - so why us? We work so hard in trying to get singles married and I questioned won’t us having a kid with special needs freak out the already risk-averse singles even more?
The reality is that by the time I arrived in Israel for that trip, Caila was almost 18 months old and had evolved into the absolute joy of our lives. I thanked G-d for my beautiful family and begged for strength and wisdom on navigating her future path.
So today my conversation is, “How can G-d make helping the Jewish people so hard! So full of challenges?”
Caila, relatively, was the easy part of my day...
What I find most difficult with Caila is fluctuations with her abilities and functioning. Sometimes Caila is usually 100% switched on and engaged and sometimes, for no apparent reason, she is only at 30 % switched-on.
She can do 4th grade math, speak two languages fluently (something that her parents without disabilities have not mastered) and shows amazing ability to understand the world and people. Yet she can have an accident because she freaked out at seeing a bee. Or you can ask her, “what is 20 times 30?” and she answers “600!” and a minute later you can ask her, “what is 2 plus 2?” and she answers “3!”
Raising Caila definitely has its challenges and rewards. Watching her development and reaching milestones can feel like watching a flower open up under a microscope. But eventually she gets there.....
I spend countless hours working with her. Last year math was incredibly hard and her private tutor suggested we define the curriculum and stop progressing at a point. Why push her??? I myself, never listen to naysayers, and this year she caught up and managed 4th grade math just fine.
I spend so much time worrying, advocating, fighting and supporting Caila - raising Caila is a full time job. I always have such knots in my stomach when she starts a new camp or goes to a new event. I obsessively check my phone for messages fearing the “Oy! What now?” I then stress that I am putting too many expectations on her. People have always warned us that inclusion gets harder as time goes on. We have received this warning from camp directors, principals, educators, administrators and therapists.
Ironically it’s become easier. As Caila has matured, she understands what is expected and she fits in easier and with less support. She is in a day camp without support and managing.
Caila is obsessed with marriage. She knows what she is going to wear to her wedding and what car she wants to drive. So I should not have been surprised when she said the following to me recently:
“Imma you know what I am dying for?” Me expecting her to say a bag of chips, an ice cold drink as it was boiling hot outside…. Instead, she said “I am dying for my husband to kiss me on the lips!” After nearly choking, I asked her why she wants that and she said “I just want a husband who will love and cuddle me and look after me.”
Her nuanced answer showed she is fully aware of the world around her and what her needs are. She looks adults in the eye and has conversations; she shows incredible empathy and lots of emotional intelligence. She compliments people and issues them her winning smile.
She changes knee-jerk reactions and challenges perceptions of special needs people.
Raising Caila is a lesson for me every day in what is possible to achieve.
#caila #downsyndrome #specialneeds #parenting #jewish #israel #lifechallenges