When my husband and I found out we were expecting our second child in December 2005 I was excited beyond words.

My husband and I knew the joy that a child brings and could not wait to welcome another baby into our family. Because we were not quite sure when our baby was conceived my doctor suggested I go for an early ultrasound to determine my due date. I was so excited to get a glimpse of the little life growing inside of me.

Excitement changed to concern when my doctor told me that the ultrasound showed increased fluid at the back of the baby’s neck, which could mean that our baby had some type of syndrome. Because of my age, 30, my doctor was not too concerned and thought there was a good chance our baby was healthy.

Fast forward to my 20-week ultrasound. I couldn’t help but go into this procedure thinking about my earlier ultrasound and worrying that something might be wrong with our little one. My heart filled with joy as I watched our baby dance around on the screen…the technician was not saying a whole lot and I remember thinking it seemed like she was taking a really long time. Then she told us she need to get the doctor to come in…this could not be good. Our gut instincts were right…the doctor rattled off markers (heart defect, clenched hands, strawberry shaped face) that made him think our baby had a genetic condition known as Edward’s Syndrome or Trisomy 18. He told us the only way to know for sure if our baby had Trisomy 18 was to do an amnio, which we agreed to. We wanted to have as much information as possible to help us help our baby.

Three days later we received the preliminary results. I remember my husband calling me at work. I was a teacher at the time and fortunately the children had left for the day. It felt like all of the air had been knocked out of my lungs, my heart sank, and the tears kept flowing.

Parents who receive a Trisomy 18 diagnosis are told that this condition is considered incompatible with life. They are told that mothers often miscarry or babies are born still. They are given articles from medical journals that are difficult to understand. The grim statistics are even more difficult to comprehend. Through online searches we were able to find something that the medical professionals had been unable to give us…HOPE. There were children living with Trisomy 18. Some lived minutes, hours, days, weeks, months, some years, but they LIVED.

At 41 weeks my labor was induced. Although nervous because of the uncertainty of whether or not we would be bringing our baby home, we were ready to meet our little girl who had already beaten many odds and made it this far. Molly made it through labor and delivery like a champ without needing any intervention. She came into the world breathing on her own and able to drink from a bottle. She was large for a baby with Trisomy 18, 6lbs. 15 oz. and 19 inches long. Because we did not know how much time we would have with our daughter, our priest came to the hospital that night to baptize her.

Molly wrote her own story. She lived 19 months before passing away peacefully in my arms on March 13, 2008. She was tough and overcame obstacles such as heart surgery, pneumonia, and surgery to get a feeding tube. She smiled, she laughed, she loved and was loved. She reminded everyone around her to live each day to the fullest. She was and will always be my hero. Although 19 months will never be enough time with our little girl, I will always cherish that time we had together. She is a part of me and has made me who I am today. I carry her in my heart and wherever I go, she goes. As Alfred Lord Tennyson said, “Tis better to have loved and lost than never to have loved at all.”

In 2009 we welcomed Molly’s younger sister into the world. Molly’s big brother reads Special Delivery to her to help her understand that Molly is watching over her and that she is not alone. Even though she never had the chance to meet Molly, she talks about her and has her own special connection with her big sister.

Because of the generosity of family, friends, even strangers my husband and I started the Molly Bear Foundation in 2009. We want Molly’s legacy to continue and we want to pay it forward by helping other families who have a child with Trisomy 18. We recently awarded a grant to a family who has a son living with Trisomy 18…he is ten years old!

—Erin