On April 26, 2020, Avery was born, and 12 hours later, we learned that she was born with Down syndrome.
I had a healthy pregnancy. We did the standard genetic blood test early in the pregnancy to screen for Down syndrome along with a few other things, and everything came back normal. I went into labor naturally at 39 weeks. Everything about her delivery seemed pretty typical, but I knew deep down it wasn’t.
As soon as Avery was born and I saw her face as they laid her on my chest, I had two immediate thoughts: 1. Her eyes don’t look like either of our eyes. 2. Something is not right, and I don’t know what it is. It was an overwhelming feeling in my gut. I just kept thinking how this was supposed to be the happiest day of my life, but I felt sick to my stomach and I didn’t know why.
12 hours later, the pediatrician walked into the hospital room to do his initial checkup. From the time Avery was born until we saw the pediatrician, no one had given us any indication that something was wrong, so we assumed that Avery was a healthy, typical baby, despite the gut feeling I had. He started asking us questions about my pregnancy and delivery, responding with “ok” and “good” as he moved her limbs around and checked her out. He then looked up at us and said, “She is displaying signs of Down syndrome.” My husband, Will, and I were shocked to say the least. We spent the next several hours, days, and weeks trying to digest the news and think about what that meant for our family and our lives moving forward. Neither of us were very familiar with Down syndrome, and we had a lot of misconceptions at the time, so our minds were going to the worst possible scenario.
It was like drinking from a fire hose for the first 6 months of Avery’s life. We received a lot of books and articles from doctors and organizations trying to help us learn what to expect for Avery’s life, potential challenges, and all the things she’s high risk for. It seemed like every few days we were getting set up with new doctor’s appointments, therapies, meetings with specialists, etc. As if it’s not overwhelming enough becoming a first-time parent, we were in uncharted territories to say the least.
For Avery’s first year of life, I felt a lot of fear. Fear of the unknown. Fear of all the health issues doctors told us she might have and the potential surgeries that go along with that. What our life might look like. What Avery’s abilities would be. How Avery would be treated and if she would have friends.
As each month passes and as Avery hits milestones, I am able to let go of some of the fears. I’ve realized that her life won’t be as different as I once thought. I’ve learned that it takes more work, more patience, and more time for her to hit milestones, but she will eventually do almost everything other children will do, just on her own timeline. I don’t see Down syndrome as much anymore when I look at her. I see my beautiful, loving, hardworking, determined baby girl who brings me so much joy and loves to snuggle, smile, and laugh.
One of the amazing things that has come from having a child with Down syndrome is that she is only 16 months old and has already taught us so much more about ourselves and the world than I ever imagined. Will and I are completely different people now than before Avery. She has made our family stronger and has taught us how to be more compassionate and caring, how to feel real joy, how to be more patient, how to be resilient and overcome adversity, and I know this is just the beginning of everything she will teach us!
Avery is a healthy little girl. She has 3 holes in her heart, and we have 1 eye surgery behind us. I know there will be challenges ahead, but if Avery has taught me anything, it is to find joy and beauty in everything, especially in the unexpected.
I am so thankful for KIND and its mission. The community we’ve become a part of and the friendships we’ve made have opened our eyes to a new way to see others and the world and KIND is helping others, who may not otherwise be exposed, to see things through that lens as well. We are excited to see what the future holds for KIND and for our Avery girl!