Grace’s Story

“She is my strength and the light of my life.”

Darrah ChildGrace, Mosaic Trisomy 9, MA, 4/27/2012

Our Amazing Grace was born after a relatively uneventful pregnancy. She was IUGR but I was an older mum and under great stress at the time so we thought that was the issue. After Grace was born she was taken to the NICU due to breathing difficulties….that is how our journey began.

We spent 4 months in the NICU of 2 different hospitals. While there we received the news of her diagnosis. Needless to say we experienced a level of heartache I would not wish on my worst enemy. I will never forget the Geneticist saying if Grace made it to her first birthday….well I don’t really remember what came next because the thought had never entered my mind that Grace might not live…To now have that thought present was life altering. I wish I could say that I handled it all like a champ and rose to the occasion but I didn’t. I felt like I was drowning in my sorrow. I was 42 and had waited my whole life for a child of my own. And the fear that my child would not live was disabling. And then I slept a little (hadn’t done much of that since her birth) and said but she looks so good! Grace has maintained a gentle spirit that is so strong she humbles me. Her sweet smile is like a reward and so gratefully received.

We are home 7 months now. Grace has a Trach and is fed by gj tube. She has a right aeortic arch with a vascular ring. She has some other heart issues, Grace does not swallow and has started to aspirate her secretions, we have just discovered a potential issue with her kidneys, She has Kyphosis and she has low muscle tone and does not sit yet. But boy does she try hard! Grace is a happy baby. She is loved by all who meet her. She is my strength and the light of my life. As we come upon her 1st birthday I am reminded of what that Geneticist said and I still think that she just looks so good!!