An important distinction… We celebrate Down Syndrome. Yes, there are challenges that come with having an extra chromosome, but it has been our experience that the good greatly outweighs the bad. Having a child with Down Syndrome is fulfilling, joyful, enlightening, and beautiful. Truly. Would that everyone could know someone with Down syndrome!! Having a child with heart defects, on the other hand, is traumatic, terrifying, and trying beyond description. When Lydia was born we received 2 diagnoses within one week. I could not get the words “Down Syndrome” and all the fear they evoked out of my brain. So much so that I brushed off “congenital heart disease” and “heart defects” as just one more thing. Little did I know how backwards my assumptions were. Down syndrome & heart defects are correlated so it can be tempting to lump them together; but I assure you, having experienced both, Down syndrome is the gift that gets us through everything else. It is the light, joy, and pure radiating love that fuels us. It’s the heart stuff—the surgeries, risks, fears, and complications—that’s hard. But is she worth it? ABSOLUTELY.
