Where Do We Go From Here?

We have made it up to our room in the hospital, but now where do we go from here?  I find myself clinging to false hope that this isn’t true.  The doctor’s can’t be right, our daughter is perfection.  My mom left to go pick up Caden and Ava, and so that we could try to rest.  My body felt so heavy with sadness that I wasn’t  sure how I was going to move forward.  I was grieving the healthy daughter that we expected.  This phrase has been repeated to me multiple times since Elena was born, and only now am I able to understand.  It is a hard situation to find yourself in, because the guilt cuts right through you.  I was sad, scared, worried and above all I felt guilty that I felt that way.  I kept telling myself that I had my daughter and I should be thankful for that.  How dare I feel the way I did.  Family was starting to show up to visit, I had to pull myself together.  I didn’t want to breakdown, especially in front of Caden and Ava.  To them, Elena was their cute baby sister, and that’s it.  The pediatrician who worked with our family pediatrician came into check on Elena, and informed us that Elena was going to have to have an echocardiogram.  Children born with Down Syndrome typically are born with some sort of congenital heart defect.  It was also decided that they were going to do an ultrasound of her spine because she had some dimpling near her bottom and they thought she might have spina bifeda.  She also told us that she couldn’t definetively say that Elena had Down Syndrome.  I clung to my false hope like my entire being depended on it, all the while I knew in my heart it was true.  The test results came back; no spina bifeda, but she does have an ASD heart defect.  “Don’t worry”, we were told, in many children with this type of defect the heart will repair itself.  Don’t worry?  That seems to be all I can do.

~ by triumphsforelena on November 9, 2010.

One Response to “Where Do We Go From Here?”

  1. You go forward! The only thing behind you is the strength of your friends and family!

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