It wasn’t until June 24, 2010, that I really learned about Down syndrome. It was the day after my daughter Molly was born. Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional chromosome alters a person’s course of development and causes the characteristics associated with Down syndrome.
I’ll never forget the moment that the doctor told us there were some ‘red flags’ that Molly had Down syndrome. The excitement and pride we had for our new daughter quickly turned into fear and worry. Research shows that a healthy 31-year old mother has a 1 in 900 chance of having a child with Down syndrome–and I was chosen as “the one.”
In the weeks and months after Molly’s birth, our days were filled with appointments with genetics clinics, pediatric cardiologists and more. Many children with Down syndrome have heart defects; however, the EKG and other tests showed no abnormalities with Molly‘s heart.
It was tough to hear doctors say that Molly might not walk, talk or feed herself. When I looked at my daughter, all I could see was a precious baby that cried and slept just like other newborns.
After a few months of feeling sorry for myself – and Molly – I decided that I could either be miserable or be proud. I chose to be proud. I buried myself in research trying to learn everything I could to ensure that Molly received the best therapy and help available.
The Down Syndrome Association of Jacksonville was (and still is) a fantastic resource for connecting us with other families and a strong voice with educational and emotional support.
We were also connected with Jacksonville’s own Hope Haven Children’s Clinic and Family Center. Located in the St. Nicholas area, people from around the world visit the Down Syndrome Center at Hope Haven for therapies and support services. As residents of Northeast Florida, we are so incredibly lucky to have this resource here in our city. Molly received weekly physical therapy, occupational therapy and speech therapy there for the first few years of her life. They were our lifeline and provided us with great hope as we watched our daughter grow up.
Today, Molly is a thriving five-year-old. As a family, we are still learning new things about the disorder each day. One of the most important things we have learned is that people diagnosed with Down syndrome go on to lead extremely rewarding lives. We are determined to make sure that Molly does too.
While Molly may have an additional chromosome, she receives no special treatment from our family. She participates in chores, she follows the same rules as her sister and she’s enrolled in a special kindergarten program at our neighborhood public school. She’s a typical kid… with an extra chromosome. She’s treated just like a ‘typical’ kid. Always.
I’m not looking for sympathy and I certainly don’t want anyone to feel bad for us, and especially not for Molly. However, I don’t want Molly’s disability to be the pink elephant in the room either.
The one thing I want you to know is that it is always okay to ask questions. Whether it is about Molly specifically, Down syndrome, the special needs community, about her school–anything. Never be afraid to talk. Asking questions shows that you care.
If you meet a family with a child that has Down syndrome, or any other special needs, treat them like you would any other family.
Molly has taught me to see the world in a new way–whether it is the people around us, the way we approach situations or just live our everyday life. She has inspired me and I hope together as a family we can inspire others too.
About the Author
Carrie McLaren, a native of Jacksonville, Florida is a former travel public relations professional turned writer/influencer. She’s mom to Maggie, age six and five-year-old Molly and loves spending time at theRiverside Arts Market and cheering on the Jaguars. In addition to being the former VISIT FLORIDA Family Insider, Carrie has also worked with Carnival Cruise Lines, Virgin Atlantic Airlines, The Florida Times-Union, First Coast Magazine and more. You can follow her adventures online at CarrieOnTravel.com and on Twitter at @CarrieMcLaren.
