Sometimes people think you’re a superhero when you have a child with Down syndrome, and they even say things like “I could never do what you do.” But the truth is—even though we probably all like to think we have superpowers—we’re just normal moms doing the best we can to make it from day to day and help our kids reach their potential. But a secret power we really do have is the strength we get from other moms on the journey with us.
What most people don’t know is that when you become the mother of a baby with Down syndrome, you join an elite squad of moms. Most of the people in this club understand the overwhelming isolation of the diagnosis moment, the fear of sending their baby for a medical procedure, and the exhilaration of seeing their baby take the first step or say their first word after working so hard at therapy. These moms know how it feels to to come home defeated and broken after a hard IEP meeting, and they know the steely strength that comes from straightening up again and fighting another day for what their child needs. They know how exhausting it can feel to cut through the red tape of health insurance and disability services, and they know the joy of recognizing that some measures of success in life—like compassion and kindness—are more important than milestones.
But the best part of this club—other than our kids, of course—are the connections we build as mothers who know. Sometimes we get moments where we spot another family in public who has a child with Down syndrome. We feel that flutter of excitement as we recognize other members of our tribe and then plan our approach. Yesterday, I had that experience at a wedding reception (across the country) where I introduced myself to the mothers of a few girls with Down syndrome, and it turned out we had already connected online and had already provided support to each other over the years!
Because of this elite crew and the connections online and at conference, I could meet up with a friend in any state in the US … and even in countries as far away as Japan, Australia, and Russia. These are friends I can message in the middle of the night who can tell me what to expect after a getting ear tubes and who can send me sample drafts of education plans for an upcoming school meeting. These are friends who have been able to console me after my son with Down syndrome was left out of a middle school party and cheer us on as he got his first job and earned his Eagle Scout award. My very best friends have become women all over the world who belong to this club, and I am so incredibly grateful for them.
And the first mom to introduce me to this club was Nancy Boldt, the mom who walked into the hospital room the day after Andy was born and showed me a photo of her son with Down syndrome on a bike. She understood that we were scared and worried for our new baby, but she also showed us that life could be fun and happy again. Her kindness and compassion on that day set us on the path of acceptance and joy, and we are forever grateful she welcomed us to the club.
At Down Syndrome Pregnancy, this is what we strive to do everyday: to give families books and articles that welcome them to our crew and make connections to networks of support both online and in person—to give them the real superpowers they need. To date, nearly a half million visitors have come to our website to find support for new and expectant parents. And we’ve had moms contact us with questions from countries as far away as Pakistan, and we’ve been able to connect them with other families, organizations, and resources within a few hours.
So today on Mother’s Day, we want to express our sincere thanks that you are members of this elite squad and hope you are able to recharge on a wonderful day filled with handmade coupons, chocolate, foot massages, and flowers. We also hope you’ll consider making a donation as we continue to offer resources, connections, and support to the newest members of our club.