7 Years I Wouldn’t Change
Caily you are seven years old today and I clearly remember the day you were born and so much since.
I remember before you were born that I had an overwhelming feeling that something was wrong but the doctors told me everything was fine.
I remember when the doctor was administering the epidural and I was praying, “Please G-d, give me the strength to deal with whatever comes my way”.
I remember when they handed me to you in good health and you looked just perfect.
I remember when we sent out an email to 8000 people saying that you had arrived and mom and baby were doing great.
I remember when the pediatrician asked “Mrs Samuels did you do genetic testing?”
I remember how we were in shock at hearing your diagnosis but I also remember that an hour later I looked in the mirror and I had such clarity that you were meant to be in our lives. I had two miscarriages between you and your sister and clearly G-d wanted you and only you in our lives.
I remember thinking, “Of course G-d would send you to us”. We literally have an open home welcoming everyone – our door is never closed. Of course our door and heart would be open to you regardless of your challenges.
I remember how we decided to send an updated message to all 8000 people – we wanted to control the message and we told the world how our daughter was born with challenges but that you are our princess nevertheless.
I remember all the difficult telephone calls and conversations sharing the news of your diagnosis. It was difficult because everyone was sad and cried except us. We were not sad.
I remember how Gavin looked at me in the hospital and said “They may as well brand activist on our forehead – we will from this day help our daughter find her way in the world and will need to clear a path ahead of her to realize her true potential”.
I remember when a well-meaning neighbor stopped by when you were 4 days old. I was holding you in my arms and she said “What? You did not do an amniocentesis?……. you should have tested and aborted”.
I remember feeling so much anxiety and worry of how this would affect your siblings. Little did I know that they would so love and adore you and be better people because of you.
I remember how people in the community left expensive gifts at the doorman. People we hardly knew thought by dropping off a gift it would make us feel better. Instead we laughed off these gifts as ‘guilt offerings’.
I remember going with you to synagogue a few weeks after you were born and seeing people’s reactions from tears to dodging us. We were proud to present you to the world.
I remember feeling that I was ready to kill the next person who said “G-d gave you this child because you can cope” or “What better family to have this challenge”. While I agree we were the perfect family for you and able to manage the challenge I hated the fact that people were really saying “Thank G-d you were chosen and not us”
I remember reading a book “What to expect when you have a child with Down syndrome” and all it spoke about was challenges, issues and illnesses. I felt like had given birth to an alien. Thanks to your dad he said “Look how beautiful she is, I can see the light in her eyes, she is going to be fine – take it one day at a time”.
I remember how many therapists defined you by your diagnosis and your challenges rather than your potential.
I remember when we wanted to enroll you in a 2 year old program at the same Jewish Day School your siblings attended and they said “no” without even meeting or assessing you. They said no based on your diagnosis – good old fashioned discrimination. We were shocked that that in year 2010 in one of the wealthiest communities in the world, in an enlightened city and community they could just get away with such outrageous discrimination.
I remember begging the school to reconsider not because it was easy but because it was the right thing to do.
I remember the outrage our request caused. Imagine that we were threatened in so many ways – they threatened to bring my not for profit to its knees, they threatened to withdraw funding for my organization, they threatened us with teams of lawyers, we even received an anonymous death threat. All of this because we wanted to have you included in a community Jewish Day School.
I remember our rallying cry was “When G-d gives you a special needs child that’s G-d’s choice; how you treat this child is your choice”.
I remember how we decided to fight for inclusion in our community. Our mantra was “Let our children in?”
I remember how a board member from the so called Orthodox Day School sent an email saying “You chose to bring this problem into the world don’t make our problem our problem.”
I remember how grateful we were when Chabad of the West Side and later SAR stood up the challenge of including you.
I remember how each year at the end of the school year your teachers always expressed concern that the next grade is harder and more expectations. Each year we decided to push you along and each time you defied expectations.
When we decided to make Aliya, I remember the fear I had moving you to a new school in a foreign country in a new language. As usual you have risen to the occasion and made a remarkable adjustment and wowed everyone.
I remember how much light, joy and delight you have brought to our lives since day one. You have an infectious smile and engaging personality and you use all your charm to melt our hearts.
I remember how a few weeks ago we were talking about a child coming over who has Down syndrome. You said “I also have Down syndrome” and I asked you what it means and you responded “It means I am special”. We could not agree more!
Originally published: February 25, 2015
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