Four weeks ago, my life changed forever. My husband Charlie and I tried for two years to get pregnant, and last April, we finally saw that thin pink line. We couldn’t be more excited! The baby we longed for would be here before Christmas. We found out she was a little girl, and started planning right away, pink nursery and all. Because of our infertility issues, we had almost a dozen ultrasounds, none of which signaled a problem. I loved being pregnant and couldn’t have been happier. We decided to name her Lila. Four letters that were very close to the way my husband signs his emails to me…LILY (Latricia I Love You) but with a little more sass 🙂
Our little Miss Lila was breech so we scheduled a c-section for December 12th. Her room was ready, my parents were in town, everything was perfect. At 2 am that day, just three hours before we had to be at the hospital, I wrote this to my little girl…
Today we will meet you after more of than two years of praying that you would find us. From the moment I found out you were growing in my belly, I knew you were special and would change our lives forever. You are already so blessed with so many people who love you, especially a Daddy who will support, protect and encourage you every day of your life. If I could give you one piece of advice on this day before your birth, it would be to trust that everything happens for a reason. It’s something your perfectionist Momma struggles with, but I am still learning every day. And always look for the best in people. Besides, I already know you are the best of me and we haven’t even met yet. Thank you for already changing our lives sweet little girl.
Little did I know, how true those words would become in just a few hours.
The c-section went great! When I saw Lila for the first time, my first thought was “She is beautiful!” but she didn’t look like how I’d imagined. I figured that no baby really ever did. But the nurses could tell something, I could feel it. We all celebrated with family and friends packed into the hospital room waiting for their first glimpse of this anticipated little lady. But 3 hours later my world came to a stop. A nurse came into the room and told us Lila showed some soft signs of Downs Syndrome and they wanted to test to be sure. I felt everyone staring at me. I zoned in and out because of the drugs I was on following the surgery. I couldn’t concentrate on what they were telling me. We would know for sure in 24 hours.
That time is a blur. People stopped taking pictures, tears were everywhere. My first words to my husband… ” she is still ours, we will love her no matter what,” but inside I was numb. We grasped on to the hope that maybe they were wrong, but in my heart I knew better.
When the results came back positive about 24 hours later, I asked everyone to leave the room, I couldn’t handle their grief on top of my own, the weight was crushing. My husband and I laid on the hospital bed with our little girl between us, holding each other and not saying anything for an hour. We were trying to wrap our heads around the news. Our lives would never be the same, many of our plans…out the window.
For two days, I didn’t shed a tear. I think I felt like, if I did, it would mean I wasn’t grateful for my little girl. As we told the rest of our family and friends, many offered comforting words of advice and support, but my eyes stayed dry. Charlie kept telling me how strong I was, but really I was a coward, refusing to let it sink in. Until our last night in the hospital, when the nurses encouraged me to walk around the hallways of the hospital to help release some the air trapped in my stomach from the surgery. All of a sudden, I saw people pouring in and out of these other rooms with Congratulations balloons and stuffed animals. I lost it, and “ugly-face” cried in the middle of the hallway. My room was filled with gifts and family too, but each was tiptoeing around Lila’s diagnosis, not sure what to say, often with sad smiles of an uncertain future. I couldn’t blame them, I was acting the same way. These other visitors were jubilant, with bright but exhausted smiles, full of plans and goals. I felt like they had stolen my joy. I feared that Lila’s birthday would forever be in my head as the best and scariest day of my life. A nurse we met at a prenatal class rushed up to ask if I was in pain. In fact, my heart was in so much pain I couldn’t speak. All I could manage to say was, “jealous.” I wanted that excitement back from the hour before her birth, from the previous 9 months. I wanted to start over, to have it all go as I planned, I wanted life to be fair. I longed to be pregnant again to have that unfiltered joy. My mind told me that I was being punished for all of the times when the road might have been too easy. I will feel guilty for these feelings probably for the rest of my life.
That night a friend sent the poem “Welcome to Holland.” It told of an unexpected trip, when your heart was full and your bags packed for another destination. It spoke of the grief for your perfect plans and the story already written in your mind for the child you didn’t have. It was the first time I felt understood and not alone. It was my permission slip to feel, to shed the numbness of the previous days, to accept the challenge ahead and to love my little girl that I spent years praying to meet. That night we sent an email to coworkers and posted on Facebook about Lila’s Downs. We told everyone not to tell us they were sorry, because we weren’t.
I still wonder if she could sense the sadness that sometimes still grips me when we go to another doctor, hear news of a friends perfect new arrival, or get a glimpse of something she probably won’t ever do. And then I remember the words a dear friend said to me in the hospital. She said, “Lila is not just your gift, she was sent here to teach us all.” My little Lila, an example of faith and hope and love before she was even a few hours old. A blessing I pray for the patience to appreciate every single day. My child. A gift most apparent when I can hear my husband talking to her from the other room, with so much pure connection that I fall more in love with him more everyday. I know she will be the bond that will define our family.
And ever since, we are learning. Finding out the successes of other children and adults with Downs. The barriers they are breaking. The paths my little girl will one day follow. She is a gift that, I pray, I am lucky enough to receive to its fullest. She is what my life was meant to be. I am forever reminded of the words I wrote to her, in the hours before her birth…”Always look for the best in people. Besides, I already know you are the best of me and we haven’t even met yet. Thank you for already changing our lives sweet little girl.”