I was recently talking with one of Caila’s therapists. I was feeling frustrated over problems we are having with Caily. She asked me if it is possible that I have unresolved issues about having a child with special needs.
When Gavin and I stood under the chuppah we did not pray or wish for a special needs child. During my pregnancy I, like all expecting mothers, implored G-d to give me a healthy baby. Yes we were shocked when Caily was born and we received the diagnoses of Down syndrome. In fact, the moment that the pediatrician said “Mrs. Samuels, did you do prenatal genetic testing?” often replays in my mind. That question that forever changed our reality.
However, right from the beginning Gavin and I were on the same page. I remember thinking to myself a few hours after the diagnosis that we have an open home – in New York, our front door was literally open all the time. We opened our home to the new to NY, the searching, the scared, to those in need. I thought to myself that if I was G-d, I would send this special needs baby to an open home – the home that accepts and loves everyone! Right from the beginning we were truly ok with the challenge G-d sent us. I recall during those first few weeks when everyone around us cried and we had to comfort them! Hard? Yes. Shocked? Yes but resolved, accepting and optimistic.
We always knew that we would have to advocate for Caily and we knew there would be challenges. I did not know how hard certain things would be. I am resolved about having a special needs child but I am definitely not resolved about the world that my daughter has to live in, the community reaction to special needs and the fact that I have to fight for every drop of support she needs even when mandated by law.
Who would have thought that in 2010 in a liberal city like NYC that my child would be denied the right to attend her community Jewish day school? I am far from resolved about the unpleasant, nasty, threatening attitude of certain sectors of our so-called religious community.
I am not resolved about the email that we received from a board member of the modern orthodox school in question stating “You chose to bring this problem into the world don’t make your problem ours!”
The school issue in Israel is just as bad. The modern orthodox world prides itself on being the most ethical, socially active and community involved group. That is apparently, until they are faced with taking a Down syndrome child in their school. We did not ask the schools to do what is easy simply but we did ask them to do what is right. I was deeply unresolved bout having so many schools slam their doors in our face until one said yes.
It was not easy to hear a family member say how lucky it is that Caily is high functioning because it would have been easier to abort otherwise. Imagine carrying your 4 day old baby and a neighbor saying to you “What? You did not screen and abort!”
I am not resolved that by law in Israel which allows for inclusion or special needs children yet there is no budget to support the law so nothing is implemented. I hate the fact that I have to be mama grizzly bear on every issue around her schooling.
I hate the fact that my child desperately wants friends and to be included and that it’s so hard for her.
We all love Caily with an intensity that hard to describe. We are so proud of everything that she has achieved. Her siblings are besotted with her. She was born with a natural charm and innocence that allows her to creep into your heart in a most special way. We could not imagine life without our Princess. Yes we are often exhausted from fighting, scared about her future and frustrated by the demands placed on us. I bet most moms on a given day would tick yes to these issues and more regardless of their families. But we are most definitely resolved about the fact that Caily is in our world!
We have never asked, “Why us?” but rather “What can we do? How can we learn from this? How can we make the world a better place?” I will never be resolved about the world Caila lives in or the challenges she faces until the world becomes a better place for her and other special needs people and I will always be there fighting for her rights.
Originally published: January 11, 2016
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