March 18th, is known to many as Trisomy 18 Day. Trisomy 18 is a genetic anomaly in which three copies of the 18th chromosome are present, instead of the typical two. Nearly five years ago, I received a prenatal diagnosis that my firstborn daughter had this extremely rare chromosomal abnormality. Immediately, I was told a termination was the best for both myself, and my daughter. In fact, as my maternal fetal doctor relayed the genetic findings to me over the phone, he shared in the same breath that he discussed these results first with my OB, who informed him my termination was scheduled.
Doctors labeled Evelyn incompatible with life, yet the very fact that she was living and moving inside of me gave signs to one thing: life. Children with Trisomy 18 who are denied medical interventions, or who are not offered any at birth generally have a 90% fatality rate. When Evelyn was born on October 18, 2016, I was told she had less than a 10% chance to survive to her first birthday.
However, Evelyn did survive. And not only did she survive, she thrived. Over the years, Evelyn became a big sister, twice! Advocating for Evelyn while she was growing and thriving was easy for me to do. “Look! My child who you labeled incompatible with life is alive! She’s growing! And thriving!” Of course life was the answer then when a beautiful life was in front of me. However, little did I know, we were getting closer and closer to March 20, 2020.
Almost a year ago, our Evelyn Grace took her last breath on this side of heaven, and in an instant she closed her eyes on earth and opened them up in eternity. Evelyn fought courageously for 3 ½ years of life until Jesus called her to her eternal home. The agony and pain following has been something I would not wish on anyone. In the days following, I was asked if fighting for Evelyn, and choosing life was worth it. Was choosing life for Evelyn worth the excruciating pain I am currently enduring? Would it have been easier to say goodbye during my pregnancy?
The truth that I hold on to is that every single one of us is given a “life-limiting” diagnosis, it’s called humanity. None of us know the exact number of days we have here on earth, and no one is promised tomorrow. From the moment Evelyn was conceived and placed in my womb, life was taking place. This gift was one for me to steward, not one to dictate or control. I take comfort that God tells us he formed our bodies and saw every single day of our life that was to pass before a single came to be. Life is a gift, it is sacred, and something that only the author of life controls. I knew that on my best day caring for Evelyn, or my worst day, I could never add or subtract a day to her life, we don’t hold that power, only our Creator does.
Fighting for life is always worth it. A shortened life does not equivalate to a lesser life. In fact, it is often those who are taken “too soon” that leave the greatest impact on others. From the moment I carried Evelyn safely inside my womb, she was my gift of grace. I knew Evelyn was a gift I wouldn’t be able to keep forever, and a gift I had to hold with open hands. Advocating for Evelyn and sharing the sanctity of life with the hundreds of medical professionals and many Children’s Hospitals has been an honor. I have seen hearts changed and softened to the gift of life through, my beautifully broken daughter.
The only tragedy to this story would be to have never met Evelyn at all. Every single one of us will die one day, we cannot escape the humanity of our bodies. Evelyn’s life continues to teach me the beauty in life and that every life, no matter the length, is worth celebrating. I know my Evelyn is now more alive than ever before, in a body of perfect strength and righteousness. This is only the beginning of all of our stories, and one day we will be reunited again, for eternity. Over and over, I will always choose life.