Meet Lily, a seven year old who is rocking that extra chromosome like a boss.
Here are some words from Lily’s Mom:
New Years Eve, that’s when we found out I was pregnant for the second time. Our oldest daughter was three years old and so excited to be a big sister! My pregnancy was pretty typical, the usual screenings, ultrasounds and appointments. Our first routine ultrasound showed that the nuchal fold was just on the upper limits of normal, but follow up imaging reassured us that the other measurements were all on track. Then there was the ultrasound of her heart that showed some thickening of the ventricle walls, but an echocardiogram in utero showed everything was really , again, just fine. The words “Down Syndrome” had been thrown around a couple times, but it didn’t seem to register with us as anything significant, everything kept coming back “normal”. So we finished up my pregnancy thinking everything was good to go. Well, that is until I didn’t feel her moving at 36 weeks. I knew something was wrong. I went to the doctor, they checked and her heat beat was strong, movement was noted, but I didn’t feel right. My doctor was amazing, she trusted a mother’s instinct and ordered further imaging at the hospital that afternoon. I went back to work and wrapped up all my loose ends because I knew this was it. I arrived at the hospital and an Ultrasound was performed. No fetal movement. We tried again, still no movement. Then things moved fast, I was signing papers, changing rooms, calling my husband from work and I was headed in for an emergency C-Section. Well, this little peanut of ours was ready to meet us, but only on her terms! On the way to the OR, my water broke, contractions began and at 12:37 am I was holding my 5lb 12oz sweet baby girl in my arms. She was perfect. Beautiful blue eyes, tiny little hands that grasped mine. Our family was complete. After a roller-coaster of a day, and a few weeks early, she was here. I kissed my husband and hugged my mom with my girl in my arms. “Wow” I said, “after this crazy ride, here she is and she is PERFECT”. That was when I heard it, the words that would change our world forever. It came from a voice in the corner of the room, “You do know she has Down Syndrome, right?” Honestly, I didn’t. All I saw was a healthy, beautiful, precious little babe with her mother’s nose and her father’s mouth. I held her tight, the room went quiet, and it was just us. It was then that I made the promise that I’m sure many mothers do for their children. I promised I would do everything in my power to keep her safe, to make sure she knew how much she was loved and how blessed I was to be her mom. I was scared, actually terrified that I wasn’t enough, that I didn’t know enough, couldn’t give her enough. But I wasn’t going to let that stop me from giving her every opportunity to live a happy, healthy and fulfilling life. Something happened at that moment, I’m not sure exactly what it was, but we never looked back. I wiped the tears form my eyes and asked the nurse if she had any articles on breastfeeding newborns with Down Syndrome. I think they had to pick their jaws up off the floor after that request. She hurried back with articles, pamphlets and any information she could find. I bought books, read articles, made phone calls and became not only a mother of two, but an advocate, a voice, a force of nature.
This August Lily will turn 8 years old. She is in second grade. She loves dance class, swim class and gymnastics with her friends. Her favorite food is vanilla frozen yogurt with rainbow sprinkles of course! She helps with the dishes, pesters her sister and amazes us everyday with her achievements, no matter how big or small they may be. The joy and love she brings to us, to her family and friends, to our community is endless. I thank God everyday for making me her mom.
We are grateful to share our story as we know that everyone’s story is unique, just as our children are. We truly are more alike than different. The people we have met, and the friends we have made by having this extra chromosome in our life has been a gift. As Lily gets older we hope to educate others and spread the message of Global Acceptance of all individuals. We encourage you to reach out to local organizations such as GiGI’s Playhouse to learn more about Down Syndrome, Lily and all of her amazing friends.
Oh, the places you will go, Lily!
It was a pleasure to do a special photo session with some kiddos from Western New York who have Down syndrome for the third year in a. row. I am hoping to spread awareness locally on messages of acceptance and beauty to individuals with Down Syndrome.
Our local news station aired the story last year to shine a beautiful light on our photo shoot experience. You can watch the story here.
BETHANY CHASE PHOTOGRAPHY IS A TRUSTED AND EXPERIENCED PORTRAIT PHOTOGRAPHER IN ROCHESTER NY THAT CREATES CUSTOM NEWBORN PHOTOGRAPHY, MATERNITY PHOTOGRAPHY, BABY PHOTOGRAPHY, CHILD PHOTOGRAPHY AND FAMILY PHOTOGRAPHY EXPERIENCES FOR CLIENTS ALL ACROSS THE AREA. BETHANY CHASE PHOTOGRAPHY CURRENTLY SERVES, BUT IS NOT LIMITED TO THE FOLLOWING NEW YORK AREAS: ROCHESTER, WEBSTER, PENFIELD, PITTSFORD, BRIGHTON, PERINTON, FAIRPORT, HENRIETTA, SPENCERPORT, GATES, CHILI, IRONDEQUOIT, GREECE, CHURCHVILLE, MENDON.
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