Lily, You Make Me Better

The dreaded first words, “I’m sorry,” began our whirlwind diagnosis story. At 14 weeks, we went in for a routine ultrasound, and our baby’s nuchal fold number was high. A scary Maternal-Fetal Medicine appointment and NIPT test later, we were pretty sure our baby had Down syndrome.

Those early weeks were filled with grief, incredible fear, and wrestling with who and how to tell of this world-turning-upside-down news. We tried to keep things as normal as possible for our then two-year-old son, whose infectious energy was a huge blessing in these dark weeks as we worried about our second baby.

This worry stemmed partly from scary conversations with providers. I do believe most had good intentions and wanted to provide the facts, but we were told all the negative statistics with very few positive stories or resources for support.

This already challenging journey was made harder when we felt providers were pushing termination. It caused unnecessary doubt and worry and made it harder to see we could have a really beautiful life, even if our baby had an extra chromosome! These things were not always explicitly said in our case, but the language used and frequency of the topic made us feel termination was the path they suggested.

Looking back, it was a terrible pregnancy filled with fear and anxiety, but hope began to emerge too. My coping mechanism was researching the heck out of everything. That led me to connect with a local organization, national organizations (like Jack’s Basket), and a handful of amazing moms. We went to a few events, and truthfully, they overwhelmed me, but I could see myself in the amazing parents and professionals I met. I knew if this precious baby was destined for our family, we could give her a great life and she would teach us so much.

There was so much to celebrate, and we tried to, but the medical worries always hung in the back of my mind. In my crazed research and desire for connection, I met four other moms all due with girls around Lily’s due date, all with prenatal Down syndrome diagnoses. This group, which has now turned into an active text chain since we live all across the US, was a huge blessing in pregnancy and newborn life and remains a great support today. These mamas get it, and we cheer for each other and our amazing girls.

I was induced the day after Thanksgiving, and our Lily made her debut after 1 AM. She was as healthy as we could ever wish for, and the NICU doctor present in the room called her “vigorous”. I distinctly remember seeing her dark hair and not believing she was real. I broke into happy sobs, the biggest relief to have her in our arms. The days after her birth were some of the most joy-filled days of my life. I was on cloud nine that she had made it safely, and she even came home with us (a first, as her older brother was in the NICU for a few days).

Now, 10 months later, I don’t see the diagnosis that consumed my thoughts throughout pregnancy. I just see my Lily: a cute, sweet baby who has an amazing smile and giggle. I wish my pregnant self could see today, but that isn’t how life works. To any families with a prenatal diagnosis going through the dark weeks, it gets better! Even though I wish I could, I can’t take the pain away, but you too will see the joy in this journey.

Thank you, Lily Joy, for coming into our family. Thank you, Jack’s Basket, for bringing hope, celebration, and excitement during scary weeks and for showing us examples, through other lucky families, of how Lily will continue to make us better.

-Kaitlin, Lily’s Mom