When I first told people about Ellie being born with Down Syndrome, one of the first things they asked was did you know. That’s a tricky question for me. I can vividly picture myself, 2 months pregnant, sitting in my family doctor’s office as a resident asked me about prenatal screening. “No, I don’t want the screening.” Honestly I felt my risk factors were low and didn’t see the need for another test. She looked somewhat surprised and explained the test to me again. Still, no. Then entered my family doctor, a kind and gentle woman who can still lecture a patient on the importance of eating right, instilling a bit of fear tinged in her genuine care. The resident noted my denial to screening, so she explained the test again. I remember thinking why is this such a huge deal, why has this whole appointment been focused on this test! It made me think, made me a little scared. Then I felt this nervous urge overcome me, I wanted to stop this discussion, “I would not terminate the pregnancy if I found out my child had Down Syndrome, it would not change a thing.” The conversation ended, they checked no screen on my paperwork. But as I got up to leave, with the best intentions, my doctor pulled me aside, “but it would change things Catherine, not for the worse, but your life, your family’s life, Mya’s life, would change.” As I walked home, a tiny baby in my tummy, I decided I needed to have a conversation with Travis, one I had never before thought to have, about the possibility of having a child with a disability, I needed to make sure we could handle that, together. We discussed the screening and he agreed, we would never terminate the pregnancy, no screening. I know that most people do get this screening done for many different reasons and there is nothing wrong with that, it was just something I didn’t want to do. At our first ultrasound I nervously watched for our baby, and there she was, moving, breathing, and I fell in love, just as I did when I first saw Mya. We left overjoyed and ready to tell our families the news. Shortly after we returned home I received a call from our family doctor, please come to my office, today, I need to talk to you. She sat me down in her office and explained that they had noticed a thick nuchal fold in the ultrasound, a marker for Down Syndrome. I tried to stay strong, we had just had this discussion, nothing will change. She offered the screening again then a possible amniocentesis to confirm. I told her I still would never abort the baby, that I had already fallen in love. I said maybe the test would be nice so I could know for sure, and she looked at me with true kindness in her eyes, “why, why would it be nice to know if nothing would change in your pregnancy.” She was right, I could buy a million books about Down Syndrome, I could search the internet for hours, but why. The decision not to do screening was what was best for me. I walked into the elevator and waited for the doors to close, I placed my hand against the marble wall, and I cried. I cried the hardest I’ve cried in my life. I let that information sink in and I let myself be sad, because crying in that moment didn’t mean I didn’t love my baby and it didn’t mean I was a bad person. At our 20 week ultrasound no markers for Down Syndrome were found, the heart did not show any defect. Ellie was very active during the ultrasound, so part of it had to be repeated, but still nothing was found. Travis and I left that appointment honestly feeling a bit relieved. But in the back of my mind I held onto that thought, what I’d heard in my doctor’s office. It stayed far back in my mind, I didn’t talk about and rarely acknowledged it, but it was there. As usual I am constantly seeing things my Ellie is telling me and I know why she was so active during that ultrasound so that maybe the pictures didn’t reveal everything. She wanted me to enjoy my pregnancy. She knew seeing excerpts on the internet and reading books that highlight heart failure and a higher chance of leukemia would scare me. She knew that only when I held her in my arms could I truly see that Down Syndrome does not change my intense love for her. So thank you Ellie for letting me enjoy being pregnant and thank you for giving me the knowledge to accept things when it was first truly confirmed at your birth that you had Down Syndrome. Because I had already cried in that elevator, I had accepted your diagnosis that day without truly knowing it, so you never saw any disappointment on my face, only love and acceptance.
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