I like to joke that if my adult kids were to get stranded anywhere in the United States, I have friends who could be there within two hours to rescue them. This isn’t because I’ve lived in every state or because I’m a traveling salesperson. This is because I have the most amazing network of thousands of friends who share my love for people with an extra 21st chromosome.
I was reminded of this after recently attending the National Down Syndrome Congress (NDSC) Conference in July where I was able to connect with people who have now been my friends for decades. These are the people I call daily—who advise me on everything from how to navigate the complexities of Medicaid to how to plan a trip overseas. They are the people who have guided me through tears after an IEP meeting, comforted me after my dad died, and celebrated with me after I finished my doctorate.
When I walk through the halls of this conference, I get hugs and happy waves from people I’ve met a few times at other conference, and I get long embraces, loud laughs, and even wacky new adventures with friends who have seen me through some of my toughest and most joyful times. They have also helped me accomplish the most meaningful goals of my life: co-authoring books, starting non-profits, teaching about Down syndrome in Russia, and even calling me last minute with research to add to my doctoral dissertation.
We have known each other since our kids were tiny, and now they are graduating from high school and college, entering adulthood, and starting to work. Our kids are friends with each other, and I have the honor of being a “bonus mom” to a few of them. People call the NDSC convention a big family reunion, and it truly is. At this point, those deep connections have even become generational as I’m now also friends with the adult children of my “mom friends.”
What nobody tells you when your child is born with Down syndrome–and what you might not even be ready for in that moment–is that you have just been given access to the most elite club of other parents, professionals, and individuals with Down syndrome. Your web of friends not only extends across the country but also across the world. I’ve now visited Russia and Japan and Canada to teach about Down syndrome … all of this is thanks to the incredible friends I’ve connected with online and at conferences over the years. In fact, if I find out about a family in Bangladesh that needs support, I can send out the bat signal on social media and get a response within an hour.
This phenomenon is not exclusive to Down syndrome. I work with people who have a range of conditions, and I hear similar messages about connection among all of us. On top of that, when we are involved in disability advocacy, the tent of friends gets even bigger. The beautiful fabric of my network includes some of the most committed, wonderful people across the country who work on issues that really matter.
It’s not even the slightest exaggeration to say that my life is richer, better, happier and more fulfilling because of Andy’s extra chromosome … and the big, wonderful family that comes with it.
