Her name is Lily. When I was four months pregnant, we found out that she had Trisomy 18. Our world was crushed as we mourned the loss of our "normal" child and faced the realization that her condition would probably be life-threatening. Still, we chose life for her. At first, our decision was based on our beliefs that it was not in our hands to terminate a life given to us—to deny this gift—and that if it were us in her place, we would want someone to fight for us, to let us have a chance. We decided that as long as Lily was willing to fight for her life, we would be willing to fight, too.
Lily was born on April 30. We said goodbye to her twice in the hospital, but each time, she came back to us. A few days later, she came home with us. She was on hospice, but we refused to look at hospice as a death sentence, even though we said goodbye to her three times at home. Still, she came back to us.
Lily is now twenty months old! I'll be honest and say that these past twenty months have not been the easiest for us, but I can also say that they have been the most joyful. It is such an amazing feeling to see Lily reach milestones, knowing that there is no guarantee which milestones she will reach. So now, even though we didn't know it at the time, choosing life for Lily has also become about the joy she has brought us. To think--we would have missed out on that joy had we chosen termination. That is such a sad thought to me.
With Lily's condition comes the uncertainty of how long we will have with her. I think that just strengthens our appreciation for this sweet little girl. Our lives are forever changed.
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.