After an uneventful, normal pregnancy, our daughter Molly was born September 24, 1998. My husband, Joel, and I had two healthy sons, Seth, nine-years-old, and Spencer, seven-years-old, so we were tickled pink with the addition of a beautiful baby girl to our family. Molly moved a lot during the labor and did well on her APGAR scores, so we had no cause for concern. In fact, our biggest worry at the time was how Seth and Spencer would react upon meeting her, since neither one of them had been happy about my pregnancy from the very beginning. But the moment they laid eyes on Molly, their attitudes changed in a heartbeat. They adored their little sister and the love they felt for her was immediate and breathtaking.
We settled into a content life as a family of five. It was easy to love Molly. She had a halo of strawberry blonde hair and a quiet, studious manner. Her wide-open eyes seemed to take everything in. I remember her, only a week old, staring at the picture of a baby on a bag of diapers and batting at the image with her little fist. She smiled at two weeks on a regular basis in response to our faces. I noticed her legs looked strange (she reminded me of a frog on its back when I changed her) but I convinced myself I was just being a nervous mom. After all, if something were wrong with her it would have been caught at the hospital or at her first check-up.
Molly slept in a bassinet beside our bed and Joel and I marveled at how she slept without making the restless rustlings we expected. Around four weeks of age we began to joke about Molly being our little noodle baby--a dainty little princess wanting to be taken care of. We knew she was not as active as most babies, but figured it was just a developmental difference. Babies have their own timetables, we reminded ourselves. She was bright, social, and nursing well. So what if she didn't have great head control or kick her legs much.
When Molly was six-weeks-old we visited my parents over the weekend. My mother, after spending a few minutes with her, expressed concern. My heart sank. At that moment I knew that the nagging doubts I had been having were a real cause for worry. Upon returning home, we made an appointment to take Molly to see her doctor. To make a long story short, the doctor couldn't find any reflexes in Molly and the very next morning we were in a pediatric neurologist's office at Children's Hospital. The neurologist spent five minutes playing with her and then told us up front that she had SMA Type 1 and probably wouldn't live to see her first birthday. The shock was indescribable. In an instant all the hopes, dreams, and goals we had for our daughter became shattered. We had never even heard of the disease. After two nightmarish days in the hospital for testing we were able to take Molly home.
Despite our devastation, we became determined that Molly would have a good life in the time she had left with us. We were honest with Seth and Spencer about her condition and there were many tears in the house, but somehow we made sure Molly never saw them. "Molly doesn't know there is anything wrong with her," we told the boys. "She is a happy baby and she deserves a happy family." Of course we were grief-stricken, but we were able to focus on what positives we could.
Our family doctor referred us to Hospice and we were sent an angel by the name of Kim. Nurse Kim visited our home once a week and formed a strong bond with Molly. She gave us added confidence in our ability to care for Molly and make her comfortable. We knew we could contact her at any time day or night with any questions. It was a relief to know we were not alone.
We were also blessed with wonderful friends and family. The support we received was overwhelming and gave us much strength. Molly became a part of many lives. We decided not to shelter her and often took her on outings. We do not regret that decision in any way.
Molly was a delightful child. At five months she loved cooing at her brothers, being tickled and tossed in the air, and watching Teletubbies and Sesame Street. We would sing "Head and Shoulders, Knees and Toes" to her, moving her hands to touch the referred to body parts, and when we would sing "eyes" she would instantly squish her eyes closed in anticipation. At dinner she would sit in her reclining high chair and hold court, scolding us if she wasn't the center of attention. One of her favorite activities was bathtime. Around seven o'clock at night she would begin to squawk at her dad in a demanding tone. Once in the water she would suck on her hand and move her legs contentedly. She would make happy noises and giggle when Joel washed her tummy. We truly treasured our time with her.
About a week before turning six-months-old, Molly caught a bad chest cold. It was a Thursday. We put her on antibiotics and various other medications. She was fairly grumpy and not resting well, but seemed to be doing better by Saturday. We thought she would pull through. But early Sunday morning she started to turn blue. We contacted Hospice and waited for their arrival. Soon after the call, Molly started moaning with each breath and she became panicky. She had the most haunting look in her eyes. I will never forget that look-- it was as if she were begging us to tell her what was wrong. We just continued to hold her, touch her, and talk to her. Finally, Hospice arrived. They put her on oxygen and her coloring returned. But Molly was still in great discomfort, so they showed us how to administer morphine through a dropper we placed on her tongue. Molly then became much calmer. We were told things didn't look good for her so we called our family. After checking on our wishes, the Hospice nurses left so we could say a private goodbye to our daughter. Molly died early Monday morning, at home, surrounded by her parents, brothers, and maternal grandparents.
Loving Molly was the most painful experience of our lives. It was also the most beautiful. Sometimes blessings come in disguise--blessings don't always arrive on your doorstep wrapped with great fortune and happiness. We have accepted that. For without Molly we would have never known the profound depths of which our family, friends, and neighbors love us. Without Molly we would have never known just how precious each and ever day is. Without Molly we would have never fully experienced pure, unconditional love. We have been given a special knowledge about life, death, and God, and Molly was our greatest teacher.
Still, we would have gladly traded all our newfound wisdom for the chance to have seen our daughter run through a meadow, put smudgy handprints on the wall, and grow up.