Have you ever seen a movie where a person receives bad news and their mind starts reeling and the voice of the person giving the bad news is faded out till you can't hear it? Everything is just swirling around and all sense of space and time are lost. This was the exact feeling I had when our pediatrician came in to my room after Hayden was born and said..."We think your son may have Down Syndrome." He went on to tell us why he thought that, but I never heard any of it. The bottom had fallen out of my world. I was falling through space. Total blackness. No sound.
I am not sure how long that lasted. He was born around 7am on a Friday morning, The next time I got to hold him was around 10 pm that night. Hayden spent the day in an oxygen tent. I spent the day with all kinds of people from various agencies stopping by to give me info and invite me to join support groups.
For the record, I never read one piece of paper from out of the stack of large manila envelopes that were left for me and I never joined a group. Just not my style. And with five kids, who has time? I'm sure they all met well, but I felt like these helpful folks were granting me membership to some kind of exclusive club that I had no interest in ever joining. I just wanted to be left alone to. Life as I knew it had just ended. I remember a poem about a trip to Holland that kept showing up that made me want to scream! I know this all sounds very dramatic. It is hard for me to go back to that day and put my feelings into words with out sounding dramatic. Unless you have been through it, it might be hard to understand. I am so far from those feelings now that it is hard to think that I actually felt that way!
The worst part of that first day was the overwhelming feeling of lose. The joy I had felt from giving birth to a new life earlier that morning had been replaced with a feeling of deep sadness. Like someone was dead instead of born. Nothing made any sense.
And yet, it all made perfect sense. I didn't need genetic testing to prove it was true. I knew it was true. When my son was first placed in my arms, newly born and covered in goo, the first words out of my mouth were, " He doesn't look like the other kids!" He was smaller for one thing. At barely 7 lbs, he seemed tiny compared to the other babies I had given birth to in the 8 to 9 pound range. In his defense he was born three weeks early. None of the others where early. I looked at him and I knew.
My family has a lot of experience with people with Down Syndrome. My mom's brother, Uncle Danny, had Downs. He was born in 1960 with a severe heart defect. Dan passed away from complications after open heart surgery when he was 15. I was 8. It was to say the least, the most traumatic event of my childhood. My mom and her sister cried endlessly for months. I can't remember anything being so sad or feeling so hopeless.
About a year later, my grandparents became foster parents to another boy with the Downs that they had met when Danny was in a New York City hospital for the heart surgery. Dan and Ron were roommates. Ron was having a tumor removed from his brain. He had no family there to visit him. Dan had asked if Ron could come live with them. My grandparents somehow remembered the request after the fog of grief had lifted. They embarked on a quest to find Ron. They new his name, but had no idea where he might live. As fate would have it, he was living right at the Syracuse Developmental Center in our own back yard! The first time my grandma went to visit him there, Ron exclaimed, "Mom, you came!" He had been waiting for them to find him. Ron became my uncle.
My Aunt Joyce became a social worker and got a job at the SDC to help others like Ron find families to live with. She just retired after 35 years!! My mom was an RN there for 20 years. I also worked for the SDC running group homes for 10 years! I have other cousins who do the same still!
To top it all off, my husband Glenn, had Aunt Patti, his dads sister. She moved in with Glenn's family when he was 17. His grandmother had died and Patti had no where else to go. She passed away this past November at the age of 68.
Interesting fact....my uncle and Glenn's aunt had the same birthday.
WAS I DESTINED TO HAVE A CHILD WITH DOWNS????
I think so!
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