Approximately one in every 775 babies in the United States is born with Down syndrome, according to the National Down Syndrome Society. I learned this statistic firsthand when my daughter Molly was born on June 23, 2010.
In the days after her birth, my family and I were met with many unknowns. Doctors told us she might not walk, talk, feed herself or ever lead a “typical” life. That’s a hard pill to swallow when you have a newborn baby.
My husband and I had no choice but to give our daughter every opportunity to succeed and today, at 14 years old, she’s proven everyone wrong. She doesn’t just walk — she runs. She doesn’t just talk — she sings (mostly Taylor Swift). She eats everything put on her plate and she doesn’t let her extra chromosome define her.
While parents are never prepared to hear their child has Down syndrome, I can’t help but be thankful for the things that Down syndrome has taught us over the past 14 years.
Slow down and enjoy the moments
While it may take Molly longer to do certain tasks (like eating dinner), we’ve learned to slow down and enjoy each other’s company. It means more family time as we sit around the table until everyone finishes their meal.
When our family goes on vacation to the Florida theme parks and Molly needs a break from walking, we stop and enjoy the scenery. If situations get a little overwhelming, we take a break and enjoy the quiet spaces around us. We are constantly reminded that there is no need to rush or to overdo it. We cherish these moments.
Always say hello
I’ve found that the public tends to be cautious when it comes to approaching individuals with differing abilities. So, when I see other children or adults staring or avoiding Molly, I always break the ice with a quick greeting. A simple hello from Molly or me is an icebreaker and always makes everyone involved more comfortable.
In most scenarios, we end up having great conversations with those who know someone with Down syndrome or have a connection to the special needs community. Saying hello is easy and always the right thing to do.
Take the numbers with a grain of salt
Early on in Molly’s life, I decided to ignore the numbers — test scores and measurements, whether they’re comparing her to neurotypical kids or kids with Down syndrome, can’t tell me much about my daughter. I’ve learned to focus more on making sure she’s progressing on her own. I can’t compare her to other kids because she’s not like other kids! When Molly goes for annual checkups, her weight and height are always measured on the scale for individuals with Down syndrome, but I take even that with a grain of salt because just as every child is different, every child with Down syndrome is different, too.
Since Molly started school, the annual IEPs, test scores and report cards have always been a constant reminder that she’s not a typical student. She’s far behind neurotypical kids her age and I understand that because we live with it daily. I don’t need a number to remind me.
As Molly’s mom, my main concern is that she’s happy, thriving and that she is given the same opportunities to shine as other kids her age.
Little things mean so much
Itchy clothes and itchy tags? They don’t mean much to me, but they can be a dealbreaker for Molly. Before, I would have never thought to cut tags out of the back of shirts or pants. Now, it is the first thing I do after we go shopping.
Molly loves the color purple. All of her school supplies are purple — her bookbag, her water bottle, her pencil case, her folders — everything. On the surface, it’s because purple is her favorite color, but in reality, it helps her know that everything purple is “hers.” So, when I shop for Molly, I shop for purple things.
Little things mean a lot to her.
She’s a typical kid
As a parent, it’s easy to get into a routine of doing everything for my children. However, I’ve learned that Molly can be independent and is capable of doing things on her own.
In our house, Molly is treated just like her big sister. She has chores around the house; she picks out her own clothes for school; she decides what after-school activities she’d like to do (and not do!); and she helps make family decisions. Nothing holds her back from being included and there’s no special treatment at our house!