Pregnant, doing yoga at the YMCA during my lunch break, I caught a glimpse of an employee. A young lady with Down syndrome. She rode the bus by herself to work. Focused on her job, she would fuss at me if I got a towel from the wrong cube. I had forgotten to worry about the possibility of having a child with special needs.
Weeks later, I had a c-section. Our baby was breach and my amniotic fluid was low. It’s a girl! (My husband did not want to know. He wanted to be surprised.) We were definitely surprised. Before placing her in my arms, the nurse practitioner pointed out her tiny nose, low ears, the crease across her palm and the space between her toes. She said, “We think she has Down syndrome.”
Brutally, candidly, my first thought was, “I don’t want that baby.” My advice — before delivering such news to parents, place the baby in their arms first.
About 50% of children with Down syndrome have heart defects.
Having a child with Down syndrome was a big enough shock. That same day we learned she would need heart surgery. They rolled her to the NICU where she spent nine days.
She had heart surgery at 10 weeks old. That was my first jolt into acceptance. Down syndrome was nothing. We wanted our baby girl alive and home.
The day our daughter was born, I felt like I was run over by a freight train. You must allow yourself to grieve the “typical” child you assumed you would have. We had dreams and expectations for this baby with this name we had chosen.
Acceptance of My Daughter with Down Syndrome
My husband cherished her instantly. His immediate acceptance of her and my attending to her every need helped me fall in love with her. We had a daughter with Down syndrome. She had blue eyes with sparkles. Another trait of the extra 21st chromosome. I was Molly’s mom.
Family, friends, neighbors, and our church rallied around us. A friend connected me with a parent from our community who had a child with Down syndrome. She is still a mentor to me, leading the way down this path in life none of us anticipated.
We learned a new word. Early Intervention. Children born with special needs qualify for therapy through the state. After three years old, they can be evaluated to continue services at the public school where they are zoned.
Molly attended The Bell Center for Early Intervention from nine days old until she was three. She was named “The Queen of Circle Time” as she always announced what activity was next.
Children with Down syndrome usually do not walk until they are two years old. She started walking at two, and two weeks later she was running, stealing toiletries off housekeeping’s cart and running down the hotel hallway.
Months later, I panicked when I realized Molly was not in the Walmart buggy beside her little sister. I checked the worst-case scenario first. I ran towards the door. A lady was walking her little bare footed self in from the parking lot.
The Birmingham area is blessed with special needs resources.
A Special Place Pre-School located at Trinity United Methodist Church in Homewood was the ideal transition. She lovingly combined the names of her teachers, “Hasellmargaretnette”. To this day as we are driving on Red Mountain Expressway, she will point out the way to “her little school.”
The Bell Center and A Special Place Pre-School are affordable, private options. Molly received her Early Intervention Services from the state through Hand in Hand. They came to our home or her daycare for physical, occupational, and yes, even speech therapy for a baby. Down Syndrome Alabama is a local support group that promotes advocacy, awareness, and acceptance. Our greatest resource is each other.
One of the best things for Molly was having her baby sister Jesilyn twelve months and 25 days later. It was like twins but being pregnant twice. Oh, the days of two different size diapers in the diaper bag. I was thrilled when they finally wore the same size.
Of course, after having a daughter with Down syndrome, we were apprehensive about having another child. We had seen so many families with much greater challenges. Many would not want to know if their child may have special needs. I wish I had known. We could have grieved, educated ourselves, and moved towards acceptance before she ever got here.
Once you’ve conceived a child with Down syndrome, you have a 1 in 100 chance of having another.
There is a greater risk of miscarriage from an amniocentesis than of having a child with special needs. A non-invasive screening became available with my next pregnancy. It involves a simple blood test and a measurement of the back of the neck during the first trimester. Some choose to terminate a pregnancy based on pre-screening results that are not always accurate.
In genetic counseling we learned that once you have CONCEIVED a child with Down syndrome, there is a 1 in 100 chance of having another. Choosing not to have that child will not change that. Molly became a big sister. Our next little girl was born without complications.
The appointments, stares, being excluded, having to fight to advocate for our child, and the stupid things people say can be overwhelming. Our life has been filled with joyful, sometimes alarming, memories. We call these “Molly Moments.”
She escapes out windows. Taking an elevator by herself down seventeen floors, we found her swimming in the beach condo pool. One day she jumped on the trampoline naked. Not our trampoline, the neighbors’. We’ve been in a music video and ridden in parades where people, whom we do not know, know her by name.