Introduction

 

A Down syndrome diagnosis changes your story. Our story changed February 14, 2017, when I was about 13 weeks pregnant. I had an NIPT test done (non-invasive prenatal testing), primarily for the purpose of determining whether Emery would be another (our fourth!) boy. The thought that she might have Down syndrome never crossed my mind. Yes, I was getting older, but I didn't believe I was THAT old, and I honestly felt that since my husband had a sister with Down syndrome, the odds that it would happen again in our family were extremely low. When the test results were due to be in, I called and left a message with my doctor, asking him if we were expecting boy #4. When he called back, however, he did not lead with the gender. He very calmly and tenderly told me that he had called as soon as he received the results, because the test showed there was a 99% chance that this little one had Down syndrome. After discussing what that meant in more detail (for example, the test only tests placental cells, not the baby's cells themselves, but generally they are the same), and discussing whether we wanted to follow up with additional testing (an amniocentesis, which we did not pursue), he asked if I wanted to know the gender. Shakily, and reeling from the information, I indicated yes, I did - and he said we were going to have a "beautiful little girl." A girl! Honestly, in those first few moments, that made the news that she would likely have Down syndrome so much harder to process. With a daughter, I finally had the chance to experience all the mother-daughter things I had dreamed about... I would have a different relationship with her than I had with my boys... but with the Down syndrome diagnosis, I felt all the things I had imagined with a daughter, all those hopes and dreams, slipping away.

I left work shortly after the call. I took the next day off as well, processing, researching, reading, praying. I knew that heart defects were very common in children with Down syndrome, so I prayed she would be healthy. And in my vanity, being totally transparent, I prayed that she would be cute. That is how my story, of my life with a daughter with Down syndrome, began. Each child with Down syndrome is different, just as every child without Down syndrome is different. And each parent processes the news of a Down syndrome diagnosis in their own way. Here I want to share a glimpse into my life with amazing Emery, my beautiful, determined, smart, funny, strong daughter who also happens to have Down syndrome.