How One Brave Mom Is Navigating a Down Syndrome Diagnosis
Endurance over Speed
“I was going to do it all,” thought Florida mom, attorney and passionate special needs advocate Catherine Davey. A notion planted in almost every mother’s head and heart from the moment she sees the second line appear on a pregnancy test. Or, in Davey’s case, when she and her husband discovered they were expecting their third child, even when science had told them it would be impossible. In this case, the stakes were even higher, as they learned that their daughter would be born with Down syndrome.
As Davey soon found out, even before her spitfire daughter — Mae, now 6 — was born, the journey of parenting a child with Down syndrome would be a marathon, not a sprint. Fortunately, unlike most marathons, Davey learned that it would not be a solo endeavor, and that doing it all herself wouldn’t, and shouldn’t, be her expectation.
Find Your Tribe
Through the initial surprise and grief of the diagnosis, Davey and her family landed firmly in a place of optimism and unconditional love. The next step seemed logical; find others who have navigated a similar journey. Davey was shocked at the valuable relationships her village was able to provide.
She encourages anyone parenting or expecting a child with Down syndrome to join their local Down syndrome association. These communities are welcoming, encouraging and comforting. They offer transparency about their own experiences and an unparalleled sense of empathy, free of the kind of sympathy that can feel disingenuous.
“It’s a safe place to talk about DS, with people who love DS,” Davey said.
Strategies to Survive and Thrive
The old adage that there is no playbook for parenting rings a little false to Davey because one of the best resources she’s discovered is an actual playbook for following up on potential medical issues for a baby/child with Down syndrome. Of course, each child’s journey is a little different, but the steps and situations discussed are tried and true. Davey found great success in following along when these scenarios mimicked her own experiences almost exactly.
Assembling your medical, emotional and mental support teams is also a crucial element according to Davey. From identifying top resources to finding the right person for your child, this one aspect simply cannot have a one-size-fits-all approach. And just because someone is internationally renowned, doesn’t necessarily mean they’ll be the right fit for your child. Similarly, what is working one month may not the next.
Davey says that you should feel empowered to find the right team for your family, and even if you find the perfect team for now, that does not mean they will always be the perfect team. Don’t be afraid to move on if that is what is best for your family.
Davey advocates for utilizing every resource possible, including opening a tax-advantaged ABLE United savings account, to help support costs associated with care. Davey utilizes Mae’s ABLE account to pay for her different therapies — including applied behavior analysis, which she credits as helping Mae master skills and overcome challenges that are common for children with Down syndrome but are not covered by the family’s health insurance.
A Little Education Goes a Long Way
Unfortunately, a Down syndrome diagnosis can sometimes mean experiencing prejudice from even well-intentioned people. Davey recommends educating yourself to be prepared and empowered — so that you can focus on how to help your child rise to their full potential.
Normalizing Down syndrome is an ongoing effort that Davey is proud to be a part of. For instance, per Davey, “One in every 691 live births is a child with Down syndrome.” Staggering numbers such as this suggest the Down syndrome experience is everywhere in every race, every culture, and every financial level. Armed with those statistics and confident attitude, Davey is ready to take on the hardest part of parenting a child with Down syndrome: changing the world so that others can see the joy as well.
Find the Help You Need — to Be the Parent You Want to Be
There isn’t a parent in America who doesn’t feel overwhelmed from time to time, and this will undoubtedly apply to a parent raising a child with special needs. It’s okay to ask for help. Read that again — it’s okay, imperative, in fact, to ask for help. This means more than finding the right medical professionals and educational resources for your children. This could mean finding your own therapist, hiring a mother’s helper, asking a friend for help, delegating duties to older children, spouses or extended family — so that you can become the parent your child needs.
For Davey, her path to advocate, and ultimately warrior, was a clear one. She is a practicing attorney who has always practiced in the area of probate, guardianship and estate planning and has put that education and expertise to work for her family. Davey and her team, always careful to give credit where it’s due, were able to identify some gaps in Florida’s laws and rules as they pertain to guardian advocacy. Through hard work, dedication and collaboration, the Florida Supreme Court approved Davey’s work. Davey was quick to add that her path will undoubtedly look different from someone else’s, but the most important thing is to be true to who you are as a parent and as a person.
More than a Diagnosis — a Destiny
Though no parent imagines walking the path of a Down syndrome diagnosis, Davey is convinced that anyone who begins that journey will come to view it as a blessing. There are certainly challenges, but the highs are exhilarating. Watching your child achieve a lofty goal, seeing them change the world with their unabashed enthusiasm for life — these make up the best part of navigating a Down syndrome diagnosis.
“You’re always going to be a warrior for them,” Davey said.
In 2018, the Davey family traveled to New York City to see Mae appear on a jumbotron in Times Square as part of the National Down Syndrome Society NYC Buddy Walk. A thrilling and telling experience for Davey who says, at the end of the day, if you ensure that your child is the star of their own show, then no diagnosis will derail their opportunity for a full life.
“This kid has made me the best version of myself. She’s turned my volume all the way up,” Davey beamed. “To see her succeed; to see her communicate; to see her be proud of herself and ride a bicycle and just be joyful is amazing. And she brings all of that out in all of us.”