Taking The Glasses Off
You know the saying “seeing the world through rose colored glasses”? Well I have been seeing the world through SMS colored glasses. Ever since Sydney was born I was always trying to figure out what was wrong. I never truly appreciated what was right. I studied her every move and always looked for what was missing. I took for granted anything that was good or felt normal and approached her with only negative energy and thoughts.
I was preoccupied with these thoughts even before the diagnosis since I had suspected something was wrong from day 1. After the diagnosis my obsession took on a life of its own. Sydney the little girl simply became one big microdeletion syndrome. The SMS glasses became a permanent fixture on my face. I don’t think I was even aware of these glasses until one day when I had a very interesting conversation with a man named Rabbi Shmuley.
Yes, you read that right.
After Sydney’s diagnosis I was desperate to make my constant and persistent pain go away so I decided to call into Oprah’s radio show. Quite frankly, I had exhausted everyone I knew and I had no choice but to turn to a fresh set of ears. I called into the show and was shocked to find myself conversing with the Rabbi. In hindsight it was ridiculous. He didn’t know my situation or me and it was highly unlikely that in 20 seconds I would be able to convey my story or my intense grief that refused to wain.
While we were talking I recall saying, “I am just going to have learn to live with the fact that my daughter is not normal and that she never will be. ” Rabbi Shmuley stopped me at that very moment and said “If you keep thinking of your daughter as wrong you will never be able to move forward in your life.” And with that our conversation abruptly ended. Unbeknownst to me it would have a profound and lasting effect.
I have thought about that comment for many years, ruminated over how to truly think and feel this way. I must admit it is easier said than done when I see her struggling with some of life’s most basic tasks, such as talking and playing with friends, or when I see her banging her head against the wall, or hitting herself in the head. When I see her so cognitively behind her peers, it is near impossible to see her as anything but wrong.
However over the years I have kept what the Rabbi said tucked away in my mind and I finally realized what it was going to take. I was going to have to permanently remove the SMS glasses I had been wearing these past 3 years and start really looking at Sydney the person and all parts of her. Slowly I began to see a little girl, a whole little girl, and not just what was missing. Yes, I still see the head banging and it is bothersome to me. But now I also see the behaviors and actions that others may not, like her unconditional love and empathy for everyone and her uncanny sense of humor. And yes, I still see how she struggles with her expressive speech but I also see how funny and witty she is despite these shortcomings. Those SMS glasses blurred my vision for all these years and I am glad to be rid of them.
The irony in all of this is that one of the behaviors Sydney exhibits when she is angry or frustrated with someone is that she grabs the glasses off of their face and throws them. To some reading this you may think this is horrible but to my SMS friends you probably can relate to this scenario quite well. As strange as this seems, in some crazy way I think Sydney is sending us a message that she wants us to see all of her which includes the good, the bad, the ugly, and the truly loving human being that she is and always will be.
In the end, it was Sydney herself who helped me to remove my glasses and with her help I plan to keep them off for good.