Joy, amusement, love, gratitude, humility, and honor. These are some of the feelings that my daughter Grace Victoria makes me feel. I can feel these throughout my entire body. They surge from the top of my head all the way to the soles of my feet. My heart hasn’t been the same since she entered my life.
Grace V. is diagnosed with full trisomy 13. An extra chromosome that deemed her “incompatible with life.” A death sentence from the medical community with the first blood test results. Then her anatomy scan which showed a congenital heart defect. “You did nothing wrong” and “It’s completely random” were some of the things we heard. Not to mention other awful statements. The one thing that I heard loud and clear was: “no one will fix her heart.”
At 32 weeks we reached out to another mom to see if she had any suggestions. She suggested we reach out to a Cardiothoracic surgeon in Omaha, Nebraska. Dr. Hammel will fix her heart; he fixed Rose’s. We followed in their footsteps and left our home in California. We traveled over 1500 miles so Grace V. could be born in Omaha giving her the best chance at life.
On August 15, 2018 she arrived. We have had our challenges. A 4 month NICU stay. A medical flight back home with another month in PICU. Open heart surgery, g-tube placement, and a tracheostomy. These surgeries saved her life and she is thriving! There is no pity or shame in our house, only love.
I’m here to tell you that being Grace’s mom is very rewarding. I look at life differently. I cherish the small and simple gifts. A smile, a tight hand-grip, a sigh of relaxation when I hold her in my arms, and fun body movements for our dance parties. She is not death, she is life! She amazes me everyday with her strength and will to live. We are reaching a huge milestone that many told us she would not live to see. She will do things in her own time. Her happiness is what we want for her.
She gives me my strength to keep advocating for her and others in similar positions. When I’m tired and think I can’t do another day, I sit by her crib and watch her. I watch her sleep so peacefully and the many faces she makes when she dreams. I watch her hair blow gently from her fan. I watch her fingers move around and grab her favorite lovey. When awake, I watch her suck on her bink or her hand and enjoy the coos and noises. It is in those moments that I thank God for answering our prayers. Whatever time we have with her will not be in vein, it will not be taken for granted, and will be cherished until we take our last breath. Grace V. will be a voice for those who are gone too soon, for those who paved a way before us, and for those who are on their way.
This life, I wouldn’t change any part of it. If I had to do it over, I would make the same decisions. I would choose her and being her mom.
Written by Grace’s mom, Deanna.
“’Trisomy 18.’ ‘Incompatible with life.’ I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it. I didn’t understand how the baby so full of life within me could be THAT sick. I didn’t understand how she was so beautiful in her ultrasounds, yet the doctors would only tell me about how ‘scary’ she would look.