THE JOURNEY

I remember as if it were yesterday - the day our son Connor was born.  One of the nurses came over to us and said that our son most likely will be diagnosed with Down Syndrome. There was the initial shock, followed by tears, followed by fear and uncertainty and absolute heartbreak that our son was beginning his life with an uphill struggle. I was taken aback, but from that moment on, with every fiber of my being, I was determined to do all that I can to ensure that he would have a meaningful and purposeful future, so my wife and I jumped through hoops and knocked down doors to get Connor everything he would need to get a head start on life.

 

Connor was in NICU for two weeks before he was allowed home. I can remember looking at my wife face everyday we went to visit him and just thinking that I don't care what he is diagnosed with, I was not going to treat my son any different than I did to any of my other children and that Connor is a blessing to us.  That in itself pushed me to be strong because I needed to be for both of us.  During his first few years of life, Connor underwent several medical procedures and operations, starting when he was just 2 days old.  This was the toughest thing I've ever had to endure.   Having to walk with him into the operating room and laying him on the table then walking out into the waiting room was horrifying in itself.  I remember crying as I walked out of the room and wanting to throw up as I became so nauseous.  At times it all became very overwhelming. There was so much we didn't know.

As the years went by, it became a bit easier as we learned to navigate the system and utilize Early Intervention.  With the information that we gathered online and through the support of Connor's therapists, we had a solid plan in place to help him reach those important milestones. We were not given much information in the hospital and there was no system in place to guide families through the journey ahead of them.  We are so thankful that we both are computer savvy and were able to navigate through all the data that is online and sort out what information we needed and what would help our son, otherwise we would not have a clue. 

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Rockaway Beach, NY 11693