The Beginning of My Journey

On April 28th, 2001 my journey into motherhood began.....



I welcomed into the world Steven Jason Dolinsky. Born via c-section one week past my due date. I labored for 27 hours! Finally due to a NRFHR (non reassuring fetal heartrate) Steve was born! A perfect baby boy! My first day as a new mommy was exciting and exhausting.
The next day the nurse came in and told me that Steven had failed his new born hearing screening. As a new mom this was devastating news...is my child deaf??? Not much support in the hospital especially when everyone would tell me this was very common, making no big deal about it. The next day I was told that we could not have a Bris(circumcision) for Steve due to a hypospadias repair that would need to be done at 6 months. So now all I can think about is, my baby needs to have surgery and could he be deaf? His hearing was testing one more time before leaving the hospital and once again he failed...

Our Journey continues....

The first 16 months of Steve's life was such a "cloudy" part of my life. He started receiving Early Intervention services at 12 weeks old. His services increased with each milestone that was delayed. In my heart I always new there was something not right with Steve, I knew it was more than just developmental delays. In the first 12 months of Steve's life I went to 13 specialists. I knew I was now on a diagnostic journey and I was going to keep seeing doctors until someone could tell me what was wrong. On August 15th, 2002 our diagnosis came. We had a positive FISH test. Steven had Williams syndrome. On that day a part of my heart died as I realized that many of my hopes and dreams for my child might not become a reality. At the same time I had a sense of relief that I finally got what I had been searching for....a diagnosis, a direction. It was now time educate myself on Williams syndrome and take action. There was no time to feel sorry for myself, it was time to make sure all Steve's medical needs were being met and to ensure that he was getting proper medical care.