Caily turned 5 on February 25. Her birthday is always a time for deep introspection. I still feel like I have a mild case of post traumatic disorder as 5 years later I still have flash backs to that moment on day 2 of Caily’s life when the pediatrician asked “Mrs. Samuels did you have genetic testing?” I recall how in spite of severe pain post C-section, I sat bolt upright. I did not need to hear his words I knew what was coming. I also have flash backs to the moment when I called my parents to tell them the news that they had a granddaughter with Down syndrome and how my dad said “Oh my G-d” and just dropped the phone. I recall the look of stress in Gavin’s eyes. I clearly remember when the nanny brought then 4 year old Temira and 6 year old Meron to visit how hard it was to be happy and not let on to them that our whole world had been turned upside down. Yes and all the calls and visits where everyone else cried and we were the strong ones. It all still flashes back and to me with clarity like it was yesterday
I also recall our resolve and calmness. I recall having an incredible moment of clarity where I said to Gavin, “After 2 miscarriages between Temira and this new baby – G-d must have really wanted me to have this child” and I also said “We have an open home – literally the door is always open to anyone and if we cannot make our home open to this new baby then our whole life is a lie”
From that moment onwards we had total acceptance. We had re-framed our challenge as G-d’s gift to us. I am so thankful that we have a strong connection to G-d and that we could truly believe that Caily is meant to be in our lives.
Even so in those early stressful days when you are setting up therapies, coming to terms with your reality and dealing with people and their stupid comments I wondered if I would ever feel truly happy, truly light hearted about life again. That moment came after about 4 months, the moment just crept up on me and suddenly, I realized that I was not only happy but enjoying life and totally in love with my little princess despite the labels she was given I have had many scared and down moments, it has not been smooth sailing I assure you. When she was 2 weeks old we attended a wedding and I recall the emotion I felt knowing that this may not be part of her reality. I also recall a play date with other 1 year olds and I had a realization of how delayed she was relative to her peers. Of course the school dramas and the community rejection have been by far the most stressful and disappointing aspects of this whole story. Parenting a child with special needs will teach you about patience, humility, determination, resilience and acceptance. You will love your precious, beautiful child more fiercely than you ever thought possible.
It’s been a long windy road and at the same time, a delightful journey. Maybe only special needs parents understand the deep love and connection you have to this child, the amazing people that you meet along the way that your lives may not have crossed paths with or simply the appreciation for simple things in life that you may have overlooked. I cannot express the joy we get from celebrating each mile stone whether it is walking or writing her name for the first time.
Raising Caily has been an exercise in raising my consciousness, raising my compassion, raising my appreciation for life.
We are told that G-d only gives you challenges that you can handle and that the purpose of those tests is to help you grow and become a better person – Caily reminds of this every day. What a blessing we have in our home that Hashem has blessed us with such an adorable and adoring test!
Originally published: February 27, 2013
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