Wednesday, January 9, 2008

Finding out for sure Part 6

I was really holding out hope that Rylie didn't have Down syndrome. Vince and me just didn't see it. I am amazed when I hear other parents say they looked at their child for the first time and just knew. I couldn't see any of the characteristics. We look back at her newborn pictures now and laugh, because we must have really been in denial.



So, it was now Thursday, three days after Rylie was born. I was leaning over Rylie's bed, talking and playing with her, when I was approached by the Nicu doctor( I have no I idea what his title was officially). He said, "Mrs. Volz, the genetic counselor is here to talk with you". No, No, No is what I cried out. Does she have Down syndrome, Is that why she wants to talk to me? He said, yes, and then started to explain something, but I ran away from him to find Vince ,who was outside in the hallway. I found him and just started crying, and saying she has it , she has it!



The genetic counselor found us out in the hallway and took us in to a private room. She had a very "cold" personality. She had papers w/ pictures of chromosomes on them ,and was trying to explain things to us. I kept asking her , what is Rylie going to be like. Will she walk, talk etc. She gave me the I don't have a crystal ball speech and went on her way. She couldn't say one positive thing to me. Where was the book Gifts back then?

I was devastated. I did not take this news well. They were still checking her eyes, ears, heart and a million other things, but now I didn't care. I felt like now Rylie has Down syndrome, and that can't be fixed, so who cares about anything else, just fix whatever you can and let me take her home and somehow deal with this. I know that sounds awful, but that was how I felt. I was in complete shock. I couldn't believe this was real but, during this time I constantly prayed and people were praying for us. And I did feel God's presence, but I felt so cheated. Many parents describe finding out a diagnosis of Down syndrome as being like the loss of the baby they thought they had, and having to go through a grieving and mourning process, and I have to agree. I knew I loved Rylie, and this is why it hurt so much. I felt bad for her. I didn't think this was fair for her.

2 comments:

Shannon @ Gabi's World said...

I just read all 6 parts to your story, and I have to say it makes me even more grateful that we received "the news" when I was pregnant. We were able to watch her heart throughout the pregnancy and the birth was a joyful experience since we had already dealt with most of the emotions ahead of time. I think Riley was absolutely beautiful when she was born and still is!

So did she ever need surgery on her feet?

rylie's mom said...

Shannon- She did have surgery to seperate the toes. It was reccomended because the bones were fused together. The bones were seperated successfully, however the skin didn't heal correctly. I will let Rylie decided when she gets older if she wants to have some "cosmetic surgery" on her toes to make them look better.I think I'll do a whole post about this someday.