Scarlett. She was named before I was even pregnant with her. She was planned from the very beginning. After my husband and son begged for years, we finally decided to have another child. It was so exciting and I was going to do everything right. Everything was perfect in the beginning. Scarlett’s room was ready and she had everything that she could possibly need before we were even 6 months into the pregnancy with our future little cheerleader. I thought I was on top of everything.
Toward the middle to end of my pregnancy, my physician informed me that something was “wrong” with Scarlett’s kidneys. On the ultrasound, it appeared that she had hydro-nephrosis (her kidneys were swollen due to a build- up of urine). At the time, I didn’t know this was what they call a “soft marker” for Down syndrome. I hadn’t had much exposure to Down syndrome in my life and in my wildest dreams I never would have imagined that this would happen to me or my family. We followed Scarlett’s kidneys with many ultrasounds along the way, but wouldn’t know the extent of her “problem” until she was born. I was terrified for my baby girl. I didn’t know what to expect. There were so many uncertainties.
Then, finally, Scarlett was born on a hot summer day in July. Following her birth, the nurses and doctor told me that I could only see her briefly before rushing her out of the room due to trouble breathing. I knew Scarlett looked different the moment I laid my eyes on her, but no one said a word. I laid in my hospital bed wondering if I was mistaken or could it possibly be…Could it be that my daughter, my princess, shared many physical features with a neighbor’s little boy I once babysat. He had Down syndrome. All I could think at the time is “Scarlett looks like Ryan”. It played over and over in my head. I was devastated. I finally found the courage to google “Down syndrome” on my cell phone and managed to show my mother the phone. I couldn’t find the words to speak. My mother left the room and came back shortly thereafter with one of the nurses who confirmed that they believed my daughter had Down syndrome. Scarlett was transported to the Children’s hospital and I was forced to remain in the hospital where Scarlett was born until I was discharged the next morning.
I have never cried as much as I did that night. My husband went with Scarlett to the Children’s hospital and I sat alone in my hospital bed. I insisted that my mom stay with me at the hospital. I was lost. I didn’t know what life from that point would be like. I imagined that I would no longer be able to work. I would have to stay home to care for my daughter who I imagined would be greatly handicapped. I had many thoughts that I don’t even feel comfortable saying. I was in a dark, lonely, place.
Over the next couple weeks, Scarlett had to stay in the NICU at the Children’s hospital. I visited her every day and tried to nurse her though it was difficult as her latch was not very strong. I wasn’t a patient at the hospital so they wouldn’t let me stay overnight with her. I drove back and forth from my home to the hospital and eventually Scarlett began to breastfeed. We grew closer every day and I slowly began to realize that my fears were misplaced. I read this book, Babies with Down Syndrome: A New Parents’ Guide, and it helped me understand the diagnosis much better. It made me realize that the things I was going through were completely normal. The thoughts and feelings that I had initially, the wondering if my daughter would be pretty, the mourning that I was doing for the child I thought I was having, etc. All of that was normal. It was a lot to digest…therapies, early intervention, IEPs, etc. but I became prepared for the challenge. No, I became excited for the challenge.
See, we start imaging the life of our children before they are even born. We have ideas in our head of how things will be and when they aren’t sometimes it’s hard to accept. But Down syndrome is not a life sentence of misery and heartache. It’s a life full of love and accomplishments. My daughter taught me unconditional love. I learned that different does NOT make a person less. And sometimes it is just the opposite. Sometimes different is more. I can’t walk into a store with Scarlett without someone stopping me to tell me how beautiful she is. She speaks to every person she passes. She lights up any room with just her smile and her undeniably beautiful soul. Yes, it is scary at first and it’s hard to accept. But don’t let society define who you are or who your child is. She is my daughter and she is perfect. If I had to choose, I would do it all over again.