Wednesday, August 11, 2010

How we found out - Part II

That ultrasound was one of the most excruciating experiences of my life. We waited forever to be taken back. The technician didn't say a word. When the doctor came in he was silent. We came to know him as Dr. Gloom and Doom. Once the doctor had taken all of the measurements he needed he spoke. No introduction... he just started showing us Grace's "normal" brain and then moving the wand to Abby and showing us where her brain was NOT normal. I hate that word NORMAL. I remember how horrible it felt bouncing around in my brain. I think at that point I shut down. Her brain was a mess. Nothing looked right. It drooped, it sagged, it was too small in some places and too big in others. My heart broke in a million little pieces. I thought why not a heart defect they could correct? Why not something fixable? Why the brain? Why???

After the u/s was over Dr. Gloom and Doom took us into his office. This exchange I will never forget. He motioned to two chairs for us to sit in. He sat behind his desk, but his feet on the table, his arms behind his head and drew a long breath. Almost a full minute passed before he spoke. I was afraid to breath. He finally said "this is the worst meeting I ever have to have with parents... no, the second worst" (what he meant was the first worst was telling parents their child was dead). He explained that her malformation would make her birth difficult. She might not make it to delivery. He explained that if she did make it her long term outcome was grim. She would likely never walk, talk or have much function. He asked about termination and thank God Brian spoke before I could and said "that is not an option". They doctor and Brian talked for a while but I don't remember it.

I barely remember the tear filled car ride home. We went right to my Moms house. We tried to explain but it was so hard. We fought so hard to get pregnant and stay pregnant and now THIS. Are you kidding? I don't want this. I don't want a life filled with either the memory of a dead child OR wheelchairs, tubes and respirators. I couldn't handle that. How in the hell could this be happening???

More to come tomorrow...


  1. This is so hard to read. I cant imagine living through it.
    It's hard to reconcile looking at your amazing little girl. She is so lucky to have you and while I know its hard, you seem lucky to have her in your life.

  2. Thanks S. I think I needed to write this all down. It was so hard to go through but it has made us such an amazingly strong family. We are lucky to have had this experience to make us who we are today.