The doctor came in….

I didn’t know this doctor but I think he was the one at the birth with my midwife. I thought he was coming in to tell us that we had been discharged and we could go. Looking back, though, I remember how the nurses kept avoiding our questions of when exactly we could go. We were getting frustrated that they wanted us to stay for 24 hours (their protocol) because our 24 hour mark was at two in the morning and we weren’t going to get up and leave then!  So the doctor came in and started talking. Then he said, “Okay, don’t freak out about what I’m going to say, but we want to do a genetics test. Your daughter is showing some signs of Down Syndrome.” Immediately, I felt the blood slowly rush down out of my face and my whole body went ice cold. I’m sure I looked white as a ghost. I couldn’t move or think. I couldn’t respond because I was trying to process what exactly he had just said. What did he say? This wasn’t right. This wasn’t happening to me. My daughter was perfect. She didn’t have Down Syndrome, did she?? So many questions filled my mind as I began to process. What was Down Syndrome anyway? Did I cause it? Did I do something wrong during my pregnancy? Was this my fault? I couldn’t live with that! What kind of life would Adalene have? What kind of life would we have? I sat there in the bed completely still. I was frozen with fear and unbelief. Ryan started talking and asking the doctor things but I didn’t listen at all to what was being said. I was in my own frozen world trying to make sense of it all. I wanted to run. I needed to leave, to get away, to leave the hospital, leave the state. I just wanted to run and never look back. A plan started to form in my mind of how I could escape and start over in another life. I didn’t want a daughter with Down Syndrome. I hadn’t signed up for that. I thought my life was over. I just wanted to run. But then I thought of my husband, Ryan. I loved him so much and I would never be happy or whole apart from him. I didn’t want to leave him. Living life without him was more scary than the unknown of living life with a daughter with Down Syndrome. So I stayed. I rejected my plan of escape and became present again in the room where the doctor and Ryan were talking. Ryan was saying something about how all the people on his side of the family are born with really squinty eyes so clearly, Adalene didn’t have Down Syndrome. Then the doctor told us that she had a heart murmur, low oxygen, and jaundice and they needed to do a heart ECHO at another hospital.

My world continued to crash in around me. I just couldn’t believe what was happening. The doctor said that we had two options: 1) Have her transferred to a neighboring hospital that could do the ECHO but didn’t have a NICU to treat her. So if there was a heart problem and she needed to stay in the hospital then she’d need to be transferred again to a hospital in South Bend which was 45 minutes away (also where we lived). OR 2) We could have her transferred to the farther hospital in South Bend first where they could do the ECHO and then treat her if she needed it. We chose option two because we would rather have one long transfer than the possibility of two transfers.

This next part is very fuzzy- I don’t remember the order of things that happened or what exactly happened for the rest of that day. I do remember my mom being there with us in the room when the doctor came in with the news. I was so thankful she was there. She told me that people with Down Syndrome are very loving and happy and it was going to be okay.

Ryan didn’t believe the doctor. He kept telling me that he didn’t think she had Down Syndrome because a lot of babies on his side of the family are born with squinty eyes and almost look Asian. He said he was going to ask his grandparents for pictures of him when he was a baby so he could show me. So I stayed hopeful that the doctor was wrong.

(Writing out how I felt then is so different from how I feel now! If I knew then what I know  now, I wouldn’t have been so scared or sad. It’s hard to say that I was hopeful she didn’t have Down Syndrome because I wouldn’t change her for the world now. She’s absolutely perfect just the way God made her. But these thoughts and feelings were real and what I experienced at that time.)